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

BEP Round 3 Day 16

TRANSFUSION DAY

So interesting day, I can't say I am all that happy that I have to get a transfusion because of all the risks etc associated with it but I NEED it so I didn't have much choice.  Some cool pics for you guys, first the "whole blood" they put in me 2 bags worth.

Then the platelets I needed since I was dropping so low.

Then me getting the stuff put in me via my port, they pump it in very very slow like 1/5 of the speed of my chemo treatments that's why it takes like 2.5 hours per bag.  I have to say I feel bad for that blood, it was minding its own business then it got dropped into a freaking war zone of death and chemo! hahahahah

All in all the infusion experience was interestingly dichotomous when taken from the perceptive of a chemo patient.  Think about this, for chemo I go in feeling better normally than I do leaving (yes yes ignoring pre-meds I mean in general).. ie chemo treatments are putting poisons in me my body has to fight.  however with an infusion, they are putting GOOD stuff in me that helps me and makes me feel better.. each bag.. each hour I was in there I felt better and better.  So while I didn't really want the transfusion to begin with.. it certainly helped me.  I feel so much better now, I can stand up and not have a headache.  I can go up and down the stairs like a normal person and not have my heart race and be out of breath like I just ran a marathon... its been nice.

BEP Round 3 Day 15

So kinda of a cruddy day.  I didn't get my last Bleo dose today for reasons I will get into in a minute, but that means I still have more chemo to go.  I was hoping to post a "I AM DONE" post, since this was my last chemo of my last round.

Anyway, they did my blood work Friday and my red blood cells and hemoglobin were very low.  I convinced the doctor to let me not get a transfusion that day because I wasn't feeling all that bad and maybe it would come up over the weekend.  That didn't happen, today my results were even lower.  So that means I couldn't get my chemo, and I have to do a transfusion tomorrow =(  Its gonna be 2 units of blood, and possibly platelets as well since mine are at 37 right now.  I can't say I am very happy about having to get random blood injected into me, and from what I have read transfusions have quite a few risks in of them selves both known and unknown things can be transferred via those blood units.

They wouldn't let us use blood from Jenn's family because there is a <1% chance that any one person can match you and they wouldn't have time to do all the tests and screening to get me the blood in time (it takes weeks they say).  So that means that I had to choose between just "waiting it out" for a few weeks and letting my body try and recover naturally, all the while giving the cancer more time to rebound without hitting it with that last Bleo... or get the transfusion and only push my chemo back 1 week.  I reluctantly chose the latter, though this is when it would be really good to have your own blood stored up for these types of things IMO.

So, transfusion tomorrow.. more tests later in the week to see how it went... then chemo next week and my CT/PET are pushed off a week as well.  Not really the news I wanted today, but it is what it is I guess.  It also throws a wrench into my plans to get cracking on returning to work.  We have some deadlines fast approaching that I really really need to get back into the swing of things for and this is yet another thing that will slow that progress.  I feel like I just can't "turn the corner" and get back to my life this cancer crap just keeps lingering and popping up with new and interesting ways to impede me.  As my wife reminds me, it could be worse... I could certainly be worse off with more cruddy things to deal with so for that I am thankful but at some point enough is enough man!! HAHAHAHA

I will post some details about the transfusion, how it went what all was involved etc for people that might have to deal with that during their BEP chemo.  Good news is that they can use my port for it so that's one less cruddy thing.  Oh and it takes 2-2.5 hours for each unit of blood, plus the  platelets so I had to charge today off to sick and I will have to do the same thing for tomorrow I am sure.  2 more days wasted, blah.

BEP Round 3 Day 8

Hello everyone, sorry for yet another "after the fact" post.  This round has been very hard on me, the cumulative effects of 3 rounds really adds up and knocks you down.  Getting around to "blog" how its going etc hasn't been a priority simply because I have been focusing on recovering.  There were quite a few times where I have been in the 8-9 range on many of my rankings over the past week, and its hard to do much but sit back and try and make it through that... blogging wasn't high on my todo list :-P  I would say the past 3-4 days were by far the hardest of the whole ordeal, as the chemo builds up in your body it really wears you out mentally and physically by the time you get to Round 3.

I do have some good news though, my blood work came back and my red blood cells and hemoglobin game backup on Monday (Thanks to my wife's cooking and giving me lots of iron and vitamin C!) so I didn't need a transfusion.  I was really hoping to not have to do that so, that worked out well.  The rest of my counts were "ok", but of course we are still doing neupogen shots this week and probably next since I tend to bottom out in weeks 2 and 3 cell count wise.

Some more good news is that my fingers have stopped hurting, and they aren't red/inflamed anymore.  I can't say with medical certainty this next fact but, the 1 day I didn't take my 1600 IU (I upped it each round) of Vitamin E in the morning was the day my fingers go so inflamed, and every day since I have made sure I have taken it.. now its gone away.  A great person on one of the forums suggested that, and of course I cleared it with my Oncologist, but  I suggest that for everyone it can't hurt.

As for the coming days, I may or may not be blogging as much this blog was meant to document and share the journey and what to expect going through 3 rounds of Bleo and that is coming to a close.  In a few weeks I will have my PET/CT and we will see how well we did then discuss the next round of treatment.  That could be surveillance (which I am hoping for of course) or it could be any number of things I don't want to talk about or consider until we get to that point.

My focus over the next few weeks is to try and find a "normal" such that I can get back into the swing of daily life, working, doing things out with my wife, shopping.. just a normal life.  Its crazy to look back and think of all that has happened over the last 3 months or so with this diagnosis and all the surgery/treatment.  Its been quite the ride, and it feels like its been ages since I have just had a NORMAL day.  More than anything else that's what I am hoping to get back soon.

As for the blog I will update it when things happen, but I am going to transition off to more of an "event based" approach and not a daily "here is what happen today" kind of thing.  At this point, I have a pretty good detailing for anyone out there what to expect and how these treatments go and I want to focus on me getting better for a little while.  I appreciate all the support and the well wishes that everyone following this has been giving me and I hope this has been informative.

Next up, 1 more Bleo shot (next monday) then I am officially "done" with Chemo for now according to my Oncologist.  Then we need to do a PET/CT and see how my tumors have shrunk.  Remember I started out Stage IIB so I didn't have any > 5cm so hopefully we can get a report back that's all <1cm or scar tissue from the EC and we can transition to surveillance.  Also, of course, we want a normal range AFP (already got a normal HCG last time)

BEP Round 3 Day 5

I am posting this a day late because, well Day 5 was crappy.  Woke up bad, didn't get any better.. ended worse.  Similar symptoms to Day 4, blood in the nose, fingers hurting, strong nausea, etc.  I slept through most of my treatment aside from a brief period where the pre-meds let me eat some rice:

As you can tell by the pic, I wasn't in the greatest mood.  The evening was mostly filled with occasionally eating and then sleeping for many hours.  Sorry I don't have a blow-by-blow like I usually do through the day but I just didn't have the energy to blog it as I went.  Here's hoping for a better weekend, and a better recovery week next week.  There is one great thing about Day 5 though...

LAST HELL WEEK DONE!

BEP Round 3 Day 4

6:35am O:5 P:4 N:6 T:4
Pretty bad start for the day, fingers hurt more than yesterday and using them is even worse.  Blowing my nose went from some light pink yesterday to full on  blood today.  I just tried not to blow my nose much.  Stomach is not happy but I expected that to happen by now, Thursday is the start of the down hill slip for many days.

9:35am O:4 P:4 N:5 T:6
Pre-meds down, taking a bit longer to kick in to push down the nausea... once they do I will try and eat something.  I have the old familiar feeling of "Starving, but can't stomach anything I want to eat".  However, we did an ice pack on my fingers and that really seemed to help they don't ache as much at rest and using them isn't as bad either.  Not sure how long it will last but its nice to have the relief while I have it.

12:00am O:2 P:2 N:3 T:7
Still very tired, benadryl is of course taking its toll. 2/3rds of the way through the Etoposide and overall I feel better.  Not great mind you but my fingers are better I guess from that cold compress I can pinch things between them and it only hurts it doesn't shoot fire through them and make me have to stop immediately so that's good.  We solved that Zofran issue with the insurance and they finally agreed to give me enough to last the rest of the week.  Blows me away that Insurance companies put up so much fight for things Drs prescribe for good reason!!  I ate a whole thing of zapped brown/wild rice.  Granted it had nothing on it, but just getting some calories into me made me feel better hopefully I can get something bigger in my stomach later today we have lots of iron rich things at the house I need to get in me to boost my Hemo/Red blood cells before Monday.

9:00pm O:5 P:1 N:4 T:7
So have been passing out off and off all day, just super drained the build up of 3 rounds of Chemo is really taking its toll on me that much is obvious.  I have been able to eat some here and there, not sure if I got 100% of the calories I should have today but my stomach is still not doing so hot.
I didn't get any work done, unfortunately aside from a few emails.  I can't really "think" clearly enough right now to focus on things.  My head hurts, and my body aches if I were to describe it I would say its a "Friday" feeling so that worries me about tomorrow.  After tomorrow I still have to live through the crappy fall out days of the weekend and next week as my body trys to come up and out of this onslaught of chemicals.  I haven't had any more blood from my nose tonight, and my fingers seem "better" I think the ice packing is helping at least for a temp solution.  Typing does inflame my fingers a bit though they are more sensitive and painful after typing for a few minutes like writing these blogs but its not too bad.

Sorry I didn't get a picture today but it wasn't a great day and I just forgot I will try and get a "Victory" one tomorrow over the last hell week (or at least my hope is that its the last hell week)

This is the comment I keep running over in my mind:
My AFP was 27, and my HCG was <1 which is amazing.  That shows the treatment is not only working but really whooping up on the cancer because that's lower than my projected half-life decay so it must really be doing great!  I am hoping that after this round all my numbers are down in the "normal" range and my PET/CT come out clear with either <1cm nodes or some dead scar tissue we can monitor.  Surveillance is the word I am looking for out of my Doctor and its the word I am hoping for as a result of all of this.  So I can focus on getting back to normal and not like I am right now.

Good night all, hopefully tomorrow holds no new surprises... and for work I am probably going to have to charge most of next week off to "Sick" time unfortunately but I will try my best to get up and running ASAP I put a lot of pride into my work (It is after all about returning mankind to Space flight!)  and it pains me to let things slip!

BEP Round 3 Day 3

Sorry I haven't posted yet, not feeling so hot today. Very tired and nausea has set in a day early. Also the pain in my fingers is worse and this morning blowing my nose had blood involved. I will update later with more details etc for now I need to relax and sleep
Here's a pic since I forgot yesterday :





6:30am O:2 P:2 N:4 T:4
Woke up this morning not feeling so hot overall, my fingers are hurting more than yesterday as well.  Seems like the nausea has set in a day early this round so that's not fun.  And of course I am tired because sleeping never fully recovers me once I get into this later stage portion of the hell week.


8:30am O:2 P:2 N:3 T:2
Here are the chemo center, fingers feel a bit better and just being up and about has taken down my tiredness a bit. I did have yet a new symptom this morning.  My Allegra hasn't been holding my allergies 100% at bay so I had some sniffle-y nose and coughing this morning, however when I blew my nose it had blood in it... and not just 1 time but like 6-8 times of blowing each time had blood in it something else to talk to the nurse about.  No headache though today so far which is good.


12:30pm O:2 P:1 N:3 T:6
I was knocked out by the Benadryl this morning, I couldn't fight it so I slept for at least 1.5 hours in the chair.  They re-ran my blood counts mostly just to check my platelets to make sure they weren't crashing (that can cause the blood coming out of my nose).  They were "normal" for me, in the 80s range which is low but that's what I have hung around at during chemo.  My WBC is still ok, but my red and hemoglobin is pretty low.  Dr. says not to worry too much about it since we have no baseline for comparison we have never drawn my blood MID hell week so there is no telling what the numbers mean.  Jenn and I are going to focus on some high iron/high vitamin C things (C helps you absorb iron) over the next few days until monday as much as I can since my stomach isnt' going to let me eat much.  If I drop below 8 on my hemo they will have to give me a transfusion which I really would rather NOT do.  All-in-all a fun day chemo wise, lots of things to keep us on our toes.  We are going to do some shopping and, while my blood counts are good WBC wise we are gonna grab a yummy burger from Ruggles Green which has great organic meats etc.  I will update later, but i think I am going to have to charge this day off to "sick time" cause I can't see me getting anything done.  I really really need to do something for a guy at work though before monday so I am going to try my best to do that at some point!!!


4:10pm O:1 P:3 N:2 T:2
Feeling much better overall, the food helped and I am gonna try and get lots of iron/vitiamin C over the next few days.  We picked up some supplies to that end, and we will be trying to boost my blood counts so I don't have to do a transfusion Monday.  The tiredness and nausea are mild but enough to make me not be of much use moving around doing things.  The pain is pretty bad in my fingers when I use them, though typing so far seems to be ok as long as I take light strokes and only type for 15-20 minutes at a time.  Afterwards they are a bit sore but otherwise not bad.  I am hoping the pain doesn't get much worse, doing simple daily tasks sucks with them like this.  Last round when my pinkies went numb from the Plat that went away by the end of the 2nd week so I am hoping this does the same thing!

BEP Round 3 Day 2

10:25am O:0 P:0 N:1 T:1
Today started off much better. I got 9.5 hours of sleep which helped a lot. Got some crappy traffic this morning but we still made it on time. Pre-meds done, and about to finish off the Platinum. So far doing ok side effect wise, I am starting to get some bad headaches over the last couple of weeks though nurse said to try aleve which I will, Norco always works but its such overkill Med wise. The "fun" of this round wont really start until Thursday if it keeps the same pattern as the last two.

3:05pm O:1 P:1 N:2 T:4
I am back home now, the drive makes it much more of a full day of chemo crud that it used to be.  I am drained, little bit a nausea but not bad and a slight headache.  I have been getting these headaches ranging from a 1->6 on the pain scale still not 100% sure what's going on with that could have been the nuepogen but I stopped taking that many days ago, nurse says it could be the zofran but I just started taking that yesterday who knows. Anyway back home, trying to get a little work done then relax a bit.  I would rather NOT take a nap because I want a full good nights sleep tonight. Sorry I didn't get a "chair pic" for you guys today it was a busy day and I was doing work/telecons from my chair and honestly it didn't even occur to me until after we left.  I will try and get them for the rest of the week though.

9:05pm O:1 P:1 N:0 T:2
I am not very tired, I fought the need for the afternoon nap so I could get a good nights sleep, however I am going to try and go to bed in the next 30 minutes or so.  I did have a couple more symptoms I wanted to let people know about.  Before I do that, I wanted to say my headache has been gone since about 5pm and hasn't come back so that's great.  However, I have some darkening of my joins in my hands on the top of them.  I tried to take a picture but it didn't come out very well.  The "worst" one feels kinda like a callous and its dark grey, I showed them to the nurse and she recommended some hand creme so that's what i am trying tonight.  The other symptom which just showed up tonight is on the tips of probably half my fingers.  I feel like they have a little any bite or a splinter is stuck in there.  If you rub them you can't feel anything but if you hit them just right it hurts, very odd since I thought a symptom of the Platinum was deadening of the fingers! HAHAHAHA.  I will mention it to the nurse tomorrow and see what she says.  Good night everyone, all-in-all not a bad day.. but the bad ones are coming =(

BEP Round 3 Day 1

9:00am O:0 P:0 N:0 T:3
So having to wake up at 5:45am to drive up here for chemo isn't all that fun, hence the tiredness rating.  However, its only for a week right.  I was a bit nervous and apprehensive about starting this week because I know full well what I am in for pain/discomfort wise and its not something I am looking forward to HA.

I have some amazing, awesome, super great (probably enough adjectives) news.  They pulled my tumor markers last Thursday and it takes a few days to get the results.  So I got them today and my HCG <1 which was expected since it was 9 three weeks ago and it decays very quickly.  The thing I was worried about was my AFP.  It started out of 2716 before my surgery (Which is quite high) and it was still 855 before I started chemo.  After the first round it only dropped down about half over the 3 week round.  That worried me because it could mean I still had quite a bit of active cells producing AFP, it could also mean they just gave off LOTS when they died which happens as well. That brings us to today, using my sheet I showed you guys last time to do the half life calculation it should have been at ~84.  I was hoping for at least 150, but really wanting it to be around 84 because that means NOTHING is actively producing markers and its decaying like it should.  Well I got the numbers back and its 27!!!!!!!  Its hard to express how happy that made me, that means in about ~11 days from that date my AFP will be in the NORMAL RANGE!   I wasn't feeling so hot this morning, tired, worried about how this week would go etc but that news made me very very happy.  Here is a pic of a print out of my numbers AND a picture of my reaction when I got them!

I will update later, we are doing the premeds.. then I have all Three today B, E, and P so it will be a long day of chemo fun but its working and that's the important thing!

2:15pm O:0 P:0 N:0 T:2
I didn't do any updates during the treatments because I was asleep HA.  I tried to do some work but the combination of me being tired to start with, then getting chemo, AND getting some benadryl for my reaction to the Etoposide meant I lasted about an hour or so then passed out for the rest of it.  It all went well though and I am back at home.  The trip is about an hour there in traffic in the morning and ~35 minutes back in the afternoon so that's not bad for a few more days.  I am still under the wonderful spell of the pre-meds they usually start giving out around 4-5 and are gone by 7pm.  But since its the first day I am hoping for a decent night.

9:15pm O:0 P:0 N:0 T:5
All-in-all it was a good day, I did some work (almost of full day) and I did some things around the house.  However, I am getting very tired now.  Since I have to wake up so early tomorrow, and every day this week I am going to call it an early night.  I did have an odd reaction though, after a hot shower it went away but my face broke out and my complexion got all crazy look here is a picture I am very confused:

HAHAHAHAHAHAHAH just kidding of course I found that when I was unpacking thought it would be a funny picture :-P (I even have my glasses on) CYA tomorrow!

BEP Round 2 Day 18

Small update, I have a Dr's appointment today to redo my blood work and see where I am count wise.  I will update it later to let everyone know.  As for how I am feeling, these neupogen shots are really taking their toll on me this time.  I have had pretty bad headaches, hot/cold flashes, and overall body ache/flu like run down feeling from them.  Sorry for it being a short post but I feel cruddy.  I will update later.


4:30pm
UPDATE: So just got back from my Dr appointment.  Good news, my blood counts are all back up!  In fact my white blood cell count is about 5x the normal range HAHAHAH super immune system :-P.  I talked to my doctor about the headaches and body "flu-like" feeling etc and he said its because my white blood cell count is so high due to the nuepogen that my body is reacting like a have an infection.  The counts will balance back out to normal in a day or so and I will feel better.  I think I am going to pop in at work tomorrow just to say hi to everyone, and maybe sync up my computer with the server while I have this cell count!

Aside from that the Dr App went well, starting Round 3 next week and we are hoping that will be the end of it. We have PET/CT scheduled for after the round and we are going to check my nodes and check for active cells (ie PET) because EC has a tendency to leave scar tissue when it dies off which can cause fault positives if you are just going to be size and not activity.  There are more things we can do treatment wise, if we need to after that but I am not going to think about that yet.

BEP Round 2 Day 15

2:30pm O:0 P:0 N:0 T:0

So last day of Round 2!  Just bleo today, and blood work to make sure my white blood cells are cooperating.  I feel great honestly, if it wasn't' for the fact that i was sitting in a chemo chair having deadly chemicals pumped into my body right now I would say I am "normal" :-P

I organized the garage/house a bit yesterday while i was feeling good.  I know that next week is gonna hit me like a ton a bricks so I want to get as much done this week and weekend as I can.  I worked for several hours last night and many more today.  My goal, since its as new pay cycle, is to work 50+ hours this week while I am feeling good and that way I don't' have many hours left to try and cover next week as I descend into chemo HELL!.

I will update later with what my blood work says and if I have to do more yummy nuepogen shots, ttyl.

3:15pm O:0 P:0 N:0 T:0

Ok I am just blown away.  I got back my blood work, and .... Its amazing I am walking around.  Nearly every count is at its lowest its EVER been some by a factor of 10!, even my Red Blood cells and Hemoglobin are crashing and that has never happened. Those are low enough to where if they drop much more I am going to need a blood transfusion!!  I am not really sure what to say, most of them are in "Critical" range and the rest are either "Alert" or "Low".  I just don't' understand how my blood counts can be such trash, and I feel fine... best I have in weeks.

So I am on quarantine AGAIN, my doctor made me put on my mask IMMEDIATELY and I can't take it off until I get home.  We are still going to do my chemo today and finish off this round... and we are gonna do LOTS more nuepogen shots (nearly out of pain meds gonna need more of those) and I see my oncologist on Thursday so we are going to reassess then and see how much my body has recovered.

4:00pm O:0 P:0 N:0 T:0
Well i got my two shots for home then next two days, and gave my self one just a second ago; so we shall see if they can bring be back up out of the abyss by Thursday when I see my Dr.  Here is your chair pick of the day, nearly done for the day:

VICTORIOUS over Round 2 of BEP!  Even though my blood cell counts are in the trashcan right now we will get them back up.  The important thing is that I am DONE with Round 2!

BEP Round 2 Day 14

I wanted to let you all know "moving day" went well.  We got everything in 1 trip thanks to a 24' Uhal, two trucks and a trailer HA.  I did a little bit here and there but since my energy lasts for about 5 minutes at a time before I am wiped out for an hour or so, we had lots of help.  Jenn's parents and her sister's husband came to help.  I can't thank them enough there is no way we could have moved without them and I am going to have to think of some way of properly thanking them.  Jenn's sister's husband especially since he took on the tasks that happen on every move where it takes 150% of someone's energy to do X (move some crazy piece of furniture or lug something up stairs etc) and he put his all and then some into helping.  All-in-all the move went well, we have everything here at the house... now is the fun task of getting it all unpacked and actually usable. We had many instances of that wonderful "Crud we need thing Y, what box is it in? HAHAH"

As for chemo related issues, I did have a few instances of my bone pain coming back and I had a take a Norco about mid day since the Ibuprofen wasn't keeping it at bay.  Luckily I haven't had the fever issue this time I had last time on it, but I think its because I have kept up pretty well with the med doses to keep that issue "hidden". I am getting some rashes back again on my arms and legs (it happen last round too), the Dr said it was from the steroids they give me in the pre-meds but it really seems to have kicked up a bit since I started back on the nuepogen so it might be related to that.  Its not bad though and only mildy itches so its alright.

I do have more news on the insurance front, my first set of Nuepogen shots were basically ordered by my Dr from my insurance (they have to be specially approved) and then they just GAVE me ones they already had while they waited to get mine approved.  So my insurance had to call me today and get me to give them "verbal acceptance of the charges" because they were so much.  Luckily they were covered 80/20 so I only had to pay 20% of it but that was still ~$975!  And that's just for the shots they gave me this time, and I am going to need more so for those of you counting that's about $850 a shot.  I need ~3 more next week and probably another half a dozen for each round so yeah  I am going to have no problem maxing out my "out of pocket" medical for the year very very soon.

As for the rest of my symptoms I have been doing really well, I would say i am back to "normal" now from hell week.  That normal is in quotes because its really a new normal for chemo where I am still tired and I don't have any engery reserves but all-in-all I feel good.  I have been eating pretty well and my stomach is doing fine with it, my taste buds are still nearly dead so really only STRONG flavors get through but even regular stuff doesn't turn my stomach it just doesn't taste like much of anything.

Well  I have 1 more Bleo shot Monday and then Round 2 is officially DONE!  I am not looking forward to the hell week of Round 3 but, we will cross that in a weeks time I am going to try and enjoy this week's NOT feeling like horrible crap :-P  For those of you counting Round 3 might be my last one, we are going to do CT/PET/Blood work and see how well my tumors in my lymph nodes responded to the chemo... fingers crossed its all I need but we can do 1 more round (for a total of 4) to give it a bit more kick then there is the RPLND surgery but I really really don't' want to do that.  Anyway, not going to think about all those what-ifs yet we will cross those bridges when we get there!!

BEP Round 2 Day 12

Short post today, just wanted to let you all know I am feeling MUCH better today.  Eating pretty normally now, energy levels are still a bit low and I tire easier than "normal" but aside from that I am doing decent.  I have a CBC today, and I will post when I know the results but fingers crossed my counts are good because neupogen gives me fever and wonderful bone pain I have to treat medically which wipes me out.

Oh btw its MOVING DAY, or at least the first day of it.  Tonight we are going to move a few things and get the place staged and ready for tomorrow's big move day.  I will post how the CBC turned out later today.


UPDATE:
Well Boo, my white blood cells crashed AGAIN.  Nearly back down to zero =(  So its back to neupogen shots for me over the weekend.  This time though I know what to expect, gonna keep on the Ibuprofen and I have my Norco to supplement it when I need to so I should be fine.  Guess the Bleo really wipes out my cells, the Dr/Nurse again seemed confused when they asked me how I felt and I said the best so far of this Round honestly... and they don't see how that's possible with my blood counts so low HAHAHA.

Oh well, so nuepogen and pain killers will be my med of choice this weekend!

UPDATE 2:
So for the first time since I started this "cancer fun" I finally got a full statement from my treatment center.  Its interesting because it shows both last years treatment/cost profile and this year's with my new oh-so-nice insurance.  Basically for all you out there wondering, each DAY I sit down in a chemo chair it costs $4,500<->$2,500 depending on what I am getting that day and what pre-meds etc I get.  That's each.... freaking... day!!!

So previously, last year with my normal person insurance before my company decided to go bonkers and change things around.  I would pay the co-pay visit cost of $40, they would get a "Contract Discount" which I assume is an insurance company and hospital basically agreeing on LESS than the full amount.. and the insurance would cover the rest usually in the $1K-$3K range each day.  Now, however with this new plan where we cover everything up to $3,500 then they start kicking in 80% until we hit $8k (which wont' take long to hit) the bills are getting crazy.  I currently have over $12,500 outstanding on my balance sheet right now and I haven't even finished Round 2.. and I have a Round 3 and maybe 4 to look forward too.  I have told their billing department (though I haven't heard back yet) that I can give them whatever X amount each month they take out of my check for the HSA and not a penny more.  I refuse to put cancer treatment on a credit card or take out a loan... I paid all that crud out of pocket last year and I don't' want to do that again.  Its just crazy to me that these treatments are so much money.  I suppose its good I got my self out of debt before I was hit with Cancer because it seems like I am going to be paying on this for quite a while.  Fun fun!

BEP Round 2 Day 10

I wanted to post an update since its been a couple of days to basically let everyone know how the "Hell-Week recovery" was going.  The first round I had a rough couple of days followed by stark improvement day to day as the week went on, with me feeling kinda normal by Wed and basically back to my own snarky self by Thursday give or take (within reason at least).

However this round has been much rougher on me, and I share this because as the chemo rounds "add up" in my system this will happen.  So for example, we tried to baby my stomach as much as possible the last day or so of hell week chemo and while it helped a bit at first we ended up down basically the same path of digestive system mutiny as the first round.  In addition, this time its lasting quite a bit longer.  I am STILL fighting my stomach on nearly everything I put in my mouth even water.  Have you ever stuffed your self on something you knew was going to make you feel bad like Taco bell or something you know causes you stomach problems?  When you are done eating, forcing every bit you can you can still kinda feel it up in your esophagus and when you burp or move the wrong way you can kinda feel the food right there.  In addition, you have this really overly heavy feeling in your stomach and it protests with gurgling etc etc for hours.  Since you have so much food in your stomach you also get very physically drained (think a really heavy lunch then back at your desk at work... eyes weary).  Now imagine all of this for someone who ate a 120 calorie soup and some water!!!  Every time I eat anything my digestive system pretends its the end of the world.  In addition to that, my taste buds are totally out of wake so almost nothing is actually appetizing to eat it all tastes like bland blah crud or worse turns my stomach.

Now all of this has led to me not being able to eat much of anything, and certainly not much of it when I do so I am seriously calorie deficient I am sure which is adding to the overall fatigue and cruddy feeling.  I am at a bit of a loss to "turn the corner" on this one honestly, if I could do a fwe days of 2500->3500 calories and get it moving through my system perhaps I could make a come back but I can't seem to stomach it.  One idea I had was to get a bunch of those Ensure meal replacement things and just try and force myself to drink X every Y hours to add up to a decent calorie intake for the day.. but those aren't exactly balanced meals and they are crazy loaded with sugar.

The other thing I have noticed about this rounds recovery time is that last time if I felt tired, and slept I would at least feel marginally better when I woke up.  So sleeping = feeling better, this time that's not really the case my tiredness is much more deep and profound such that sleeping doesn't really aid or cure it.  Again this could be both the added round of chemo and the lack of calories adding to this effect I am not sure.

Now on to the good news, I do actually feel a bit better today and I am going to focus on eating as much as I can and drinking water etc etc .. the normal drill.  I really just wish there was some magic bullet.. take X pill or eat a bunch of Y and it would solve this but that doesn't seem to be the case.  I am holding in there though, and I KNOW I will feel better eventually its just taking more time than I would like!!!!

BTW my fingers are crossed that my Dr decides 3 rounds is enough, 1 more round of this is more than enough for me I think hahahaha the thought of 2 more rounds is a bit much to take right now but I know I will do whatever is needed....

BEP Round 2 Day 8

So I survived the weekend.  It was pretty bad at times, fighting mostly stomach and nausea related issues and just overall crazy tired.  What's odd about the "tiredness" is that I could be at a T:6 and sleep for a few hours and wake up and feel like I got no sleep at all.  And as nice as we were to my stomach eating light things, it still chose to rebel pretty bad this weekend.  I wouldn't say worse than last hell week's weekend recovery time but just different. So on Saturday I mostly slept all day, I woke up to eat/drink/take pills and be somewhat awake for short periods of time but most of the time I spent knocked out.  Sunday I was a tiny bit more active but being awake also exposed me more to my stomach problems so it was a mixed bag.  As for today I do feel better overall, but my body/mind still aren't cooperating 100% yet.  For those of you out there asking about the mental impacts of chemo they became much more clear this weekend and toward the end of hell week. Having a conversation sometimes it was hard to keep my train of thought or come up with a word I wanted to say.  And doing little things on the internet or responding to work emails required MUCH more effort mentally to stay focused and get my thoughts out than normal.

As for new symptoms/side effects, I do have a bit more ringing in my ears but its still pretty rare and certainly not constant or annoying just yet.  My pinky fingers are showing signs of "numbness" or tingling which peaked on friday and seems to be a bit better by today.

On the lighter side of things, Jenn and I got the keys to our new place yesterday.  So the moving shall commence soon!  We are still packing up here at the house, and really most of it will happen next weekend with the help of her parents and I think her cousins but it will be nice to get into the new place.

12:00pm O:3 P:0 N:2 T:2
So my Bleo dose is at 2pm today, where they will draw blood and see if I need any neupogen so I will update with the status of that as well.  Once I get there and get all settled I will do another post.  I did unfortunately lose another ~7.5 lbs over the hell week recovery weekend so I am sure my nurse is gonna
give me a hard time about that HAHAHA.


8:00pm O:2 P:0 N:2 T:5
Sorry I didn't update sooner, its been a busy day.  So my Bleo treatment went fine, uneventful.  My cell counts came back "ok" not great, still suppressed but not bottomed out like that one time.  We are going to draw blood twice a week to find crashes so we can stay ahead of it with neupogen at least that's the plan.  I am still having stomach issues but I think they are starting to clear, I have been able to eat a bit more today so that's good.  I really want to start getting a bit more work done, especially since last week whooped me up so much, and I have some things I really need to do this week (and some tonight) so I am hoping I can get that all done.  Nothing crazy urgent, thankfully my team back at work really stepped up and got our delivery out without me there which was so great of them, but I don't want to slip too far behind on stuff because there is always a "new" problem around the corner!  As this week progresses I will start to feel more normal, and I am even hoping to go into work maybe Friday for a little while both to sync up my work and to say hi to everyone.  When you spend 50-60 hours or more a week with a bunch of people its very odd to NOT see them all the time I feel very secluded and cut off quarantined to the house HAHAHA.

BEP Round 2 Day 5

8:05am O:4 P:2 N:5 T:5

Moving slow this morning again, just overall flu-like feeling of tiredness and being drained.  I am very hungry but my stomach isn't in a state where eating would be good.  Once I get pre-meds in me and things settle down I will try and eat something.  Last day of the hell week, just need to hold out through it and I will be done with the worst part of Round 2!  Oh they are drawing blood to check for my levels too just in case we need to do some nuepogen shots to boost me back up.

9:45am O:2 P:1 N:2 T:3
Feeling better, got pre-meds.  Also my Dr added a new med to the mix, its a longer acting anti-nausea kinda like Emend that will last me through the weekend.  Last hell week, my weekend after was pretty hard so he says this should help taper me off a bit lighter.  Got my blood counts back and they are "ok" HGB/Red are fine... platelets are holding around 80ish since the start of chemo so not great but doing ok. WBC etc are suppressed but still in the "low-normal" range so we aren't going to do the nuepogen over the weekend.

12:30pm O:1 P:1 N:2 T:6
HELL WEEK 2 DONE! I am back home now, I feel "ok" but I know that's the pre-meds talking.  I am very tired still though just wiped in general.  I went ahead and charged the rest of the day to sick time, I need to just sleep and focus on making it through the weekend and recover.  I am going to try and kick it up a bit next week work wise and knock out some unit tests.  I have a great team at work supporting me and they really picked up some of my stuff this week.  Thanks so much guys/gals!  I am going to try and keep my meals very light and mild this weekend and avoid the horrible stomach issues I had coming down off last hell week.  So I realized today that if I only have to do 3 Rounds I am more than half way done!!!!  And even if my Dr decides I need a 4th I am still halfway done with the hell weeks so... starting to see the light at the end of the tunnel (at least for this section of treatment).  Pick of the day, sorry I was going to try and shoot a jovial silly one but honestly this reflects more how I fell so might as well be honest so many bags hooked up to me! hahahaha

9:30pm O:5 P:1 N:6 T:6
At least its predictable. Back to the crappy nighttime feeling. However, at the end of last hell week I had to do xmas eve and xmas stuff... this time I don't have to do anything so I plan to sleep.. take pills and drink water etc and nothing else. Just gonna shut down for a couple of days and try and recover. I may or may not post until my Bleo treatment monday depending on how I fell.

BEP Round 2 Day 4

Late start waking up this morning. Very tired. Getting premeds right now I will post an update later.

9:45am O:3 P:0 N:1 T:5

So having some serious fatigue issues today, I woke up (over an hour late) at about a 8 probably on the Tiredness scale.  I slept "ok" I guess, not super great but decent.  But I can't seem to really re-coup my losses tiredness wise.  I am deep into Round 2's hell week so my level of tiredness could be normal I suppose.  Anyway I am doing fine otherwise, my stomach is much better today and overall I feel ok kinda like I just had a really hard day yesterday working out or maybe pulled an all-nighter or something.  Just started the platinum, so I will update later how everything goes.  Still zero mouth sores which is awesome, we have done a great job staying ontop of that this time and its nice not to have to deal with that.

As for moving I felt really good last weekend and we got most of the house packed up, we have a few more things to do but we are in really good shape to move... and we get the keys Sunday (though we probably won't really start until the 21st when I got the SUPER UHAUL mover :-P )

1:05pm O:2 P:0 N:1 T:6
Done for the day, only one more day left for this round's hell week.  I am crazy tired though, I feel like this week is taking a lot more out of me than the first week did.  Though I remember more nausea and other issues the first week so I guess "just" being tired is better than all that.  The chemo day was uneventful, more bags of poison, more fluids... then done.  No reactions or any surprises today on that front.  We did find a bug, we think, in some of my code at work so that's always fun especially trying to debug remotely from a chemo chair over a shared desktop session with CRAZY lag because the hospital wifi is crud.  Hopefully I can get some rest and take a shot at fixing that later, or maybe someone on my AWESOME team back at the office will fix it before I even get a chance.. go guys go! hahahaha  Here is your chair pic of the day (hat off) feeling ok just super tired.

4:45pm O:1 P:0 N:1 T:3
I wasn't able to sleep, but I did get to relax and take a break for a while.  My mind was too focused on the work thing, and other stuff... plus "chemo tired" doesn't always let you sleep its a weird tired feeling.  Anyway, I wanted to let you all know one of the AWESOME guys on my team Nhat found a great work around for my cruddy bug which will let the delivery go out! Great job Nhat, you are one of the reasons I love working on this project.  Working with you the last 5 years has been great!  And I can come up with cleaner solution once I can think better next week HA.  Again, thanks so much for stepping up and helping me out!  Oh and someone asked me earlier in the blog if the chemo affected me mentally as well as physically and I can say YES for certain now... just reading this simple compound IF statement that Nhat sent me earlier in our debug session made me think much harder than it should have... so yes be wary of your ability to do analytically thinking at least during strong hell week, I still "got it" it just took me longer than it should have.


9:15pm O:5 P:2 N:5 T:3
Its getting much worse, this is how I remember last Thursday/Friday being as the pre-meds wore off.  My head hurts, my stomach feels horrible, and I feel like I have the flu or something.  I am not overly tired but my knees are hurting (happens when I get tired or over work them its something from high school).  I went ahead and took a promethazine, hopefully that will help turn the tide.  I might up my Ativan dose as well because it has anti-nausea properties but I am wary of over medicating the issue.

BEP Round 2 Day 3

6:15am O:1 P:0 N:1 T:2
Actually feeling pretty good this morning. I never did end up taking a nap during the day yesterday, and while I felted pretty drained toward the end there.. I got MUCH better sleep at night, and I think a good 8 hours of solid sleep seemed to help me better than lots of little naps. Anyway, its hump day of this week and last Round this is where my symptoms really started to kick it up a notch (urgh I really dislike that show).
This is when my tongue sores started to set in, my nausea really started to ramp up, and my stomach basically refused to play nice with anything. However one thing I have noticed already that's better than last time is that metal taste isn't as bad... its certainly there especially WHILE I am getting the chemo but it doesn't seem to be lasting. Its different this time, I just can't taste much of anything. Not sure what is better.. metal taste or NOTHING taste :-P As for the comment/suggestion about a video blog, I had thought about that but even though I am devilishly handsome and witty (All be it more aerodynamic as of late).... not sure I have the skills needed to do a decent video without it looking like Blair witch project or something (which btw I can't watch more than like 3 minutes of without becoming crazy motion sick!!!!)I will leave the video work to the professionals at PTP NEW MEDIA :-P
Chemo starts at 8:30am so once we get settled etc I will give you guys an update around 9-10.. CYA!
TIP!!: Little tip for all you guys (and gals if you are cooking for your guys) I found it almost impulsive this morning that every time I handled RAW food and put it in to cook I went and washed my hands before returning to cook. No sense in risking mixing in a bit a raw "stuff" when your body has enough to deal with right now.
9:15am O:3 P:0 N:3-7 T:0
Something new has been happening. So normally "waves" of nausea have been from smells or something but this morning I am getting spikes up into the nearly vomit range for no reason. 1 was very close to the tipping point. They are doing the premeds now so hopefully that the squash that. I will update later with how it goes. Taste is still mostly "dead" which I guess is better than everything tasting like tinfoil B-)
10:15am O:1 P:1 N:2 T:1
Well not sure what happen with blogger there but it inserted all the HTML code for some reason. Jenn cleaned it up for me and emailed it back. Another new thing happen. I had some light 1-3 level pains in my left chest area. We stopped the platinum for a minute just in case but my blood pressure and heart rate were fine. It went away a so we started back up, no idea. I do have a thing when I get stressed with a very sharp pain right in the middle like in my sternum but this wasn't that. And no were near that strength. Oh well it went away and we are back off and running. BTW my nurse officially rocks. With all my issues with insurance one of my best meds is Emend but its like $900 a dose and they are being a pain about it. Well she got me a FREE dose pack voucher from their pharmacy. \(^-^)/
Awesome free expensive pills from my nurse, she rocks!

1:45pm O:1 P:0 N:2 T:4
Leaving a bit tired, with some mild nausea but that's better than I was in Round 1 so I take it as a victory.. so you get VICTORY POSE!

2:35pm O:1 P:0 N:1 T:2
Ran some errands, basic stuff and got my nice free $900 meds.  When I got home I got caught up on some work emails and... well not going to get into it but it was a surprise to say the least!

6:20pm O:1 P:0 N:0 T:0
I feel a little "off" overall, but it might be from my work thing I dealt with. Honestly, I feel pretty dern good for being halfway through my Round 2 (which could be out of 3 or 4 depending on how things go).  I got some new toys in from Amazon I am playing with and I am going to do some work for a few hours later today once I get settled.  I did a few hours starting at 5am ish when I woke up so I figure if I can get in 4-6 hours at least on these HELL WEEK days I am doing good.  I will post later if anything changes for the worst or any odd symptoms show up.  My body seems to be handling this round better for some reason.  Either my wife and my plans to "stay in front of it" this time and keep my TIPS going full force or maybe my body is just getting used to the onslaught :-P

9:35pm O:4 P:0 N:3 T:5
As is usually the case, the evenings are the worst.  Longest away from the pre-meds, I have stayed up on all my medication but it doesn't seem to really keep things at bay.  I am trying my best to stay up long enough to get a decent nights sleep until tomorrow's treatment.  My nausea is up because I was quite hungry and pulled a rookie mistake and ate a huge serving... now my stomach is hating me and when you do that it drains you and makes you feel "flu-ish" all over.. hence the Overall rating.  PORTION CONTROL, tip for the night.  Goodnight all, I am going to hope for a great morning!

BEP Round 2 Day 2

1:51am O:3 P:0 N:4 T:0

So I have had some spikes in nausea up into the 7-8 range, I was talking with my wife about how bad one of the "waves" was and I said something like "It almost feels like if I just THOUGHT of something that smelled bad I would...." and nearly had to run to the bathroom!  Crazy even in my hardest days of Round 1, I was never that sensitive to just thinking about something.  I think its because I waited to eat until about 30 minutes before my Zofran dose.  So that means it was at its weakest and it took about an hour or so to kick in so that's 1.5 hours of me being vulnerable to nausea, and I decide to eat... smart move.  Anyway I said we should probably be more aware of my dosing schedule as it aligns with my eating schedule.  I shouldn't try and eat a big meal at my weakest point, so to speak. Anyway I slept a decent amount last night, and then I slept through most of my session yesterday AND slept for like 4.5 hours mid day when my body just gave out so ... I am not really tired right now.  I am just watching TV, and I did a little work (for you co-workers following this.. Unit Tests are boring so so freaking boring!!!) resisting the urge buy more things on Amazon... HAHAHAHA

My chemo isn't until 10am tomorrow, and its a big day I have my normal E&P rounds but I also have my bleo AND they are going to draw blood to check on my SUPER HUMAN white blood cell count :-P Depending on where that is, we are going to do another nuepogen shot or X however  many the Dr wants.  I think we, I am basing this on zero medical experience, probably won't do more than 1 or 2 considering 4 shot me up to 3x the normal white blood cell and neutophil count HAHAHA but hey he could keep it like that.  It was nice not to have to wear the mask when we ran some errands... being bald is one thing but being bald AND having a medical mask on makes 100% of people stare at you.  With next week being a "Bleo only" week, I am hoping my white blood cells stay up enough to go into work for a little while.  I am getting a good amount of work done here but I have to say its very odd NOT to be at work.  This is coming from some one that probably averages 55-60 hours a week most of the time and can go into the 70s or higher during peak times like before a build being due or something.  Its just very odd to be basically quarantined to the house, my only trips out are to the hospital to get more chemicals pumped into me or the occasional errand where I have to be very careful about anyone around me that could be sick etc.  Its actually funny, my wife and I were talking about how we have become very good observers of people's health.  Are their eyes/cheeks/nose red, do they look "out of it" etc etc.  This one lady sneezed and and I not kidding you I did an immediate 90 degree turn into another aisle before I could even really process WHY I did it.  Anyway I am just rambling now cause its late and I am bored.  I will update you guys/gals later today when I get my chemo etc.


10:30am O:1 P:0 N:1 T:0
So I am feeling much better this morning, my nausea is mostly gone still have that "bubbly" feeling in my stomach.  I described it to the nurse last time as a light "food poising feeling" she didn't know what that meant HAHAHA guess you have to had food poisoning to understand.  I talked to my doctor and we are going to TRY 12.5mg of IV benadryl this time instead of 25 (We started with 50 which immediately knocked me out).  Hopefully that's enough to get the Etoposide from giving me a bad reaction and its low enough to keep it from making me sleep all dern day!  Well I will post more/later as the day unfolds.

3:30pm O:2 P:0 N:3 T:5
All done, Bleo, Cisplatin, Etoposide... swimming around in my body whooping up on Cancer... and my hair what's left of it :-P.  So the moral of the story today is CRAZY amounts of water to get it all flushed out of my system.  Tongue is doing good, no sores yet.  The 12.5mg of benadryl worked, I didn't have a reaction to the Etoposide so that's great we are going to leave it down at that level.. easier for me to function at those lower dosages.  I might try and persuade them to try the full 523ml/hr speed instead of the reduced 400ml/hr speed tomorrow we will see.  All in all I feel ok, very tired but I normally am when I get home from a chemo set and with it being 3 of them today its that much more for my body to deal with.  I am having some nausea issues, but they are minor mostly just uneasy stomach and NOTHING sounds good... like I feel as if maybe I could eat but nothing sounds good and I am apprehensive of what some random thing would do to my already bubbly stomach.  Here is your "chair pic" for the day, I am actually working on a stupid Unit Test and it just refuses to link for some reason AAaaaah I hate linker errors they are so hard to debug.  For you work people reading.. take THAT for commitment 3x Chemo day and BAM still doing work :-P HEHEHEHEHHE

Oh and here is a pic of the Bleo I said i was gonna get you guys, I kept forgetting its a tiny bag:

And I will update later how the day went if I had more nausea or if I passed out for 4.5 hours again :-P cya!

9:45pm O:3 P:1 N:4 T:5
So I made it through the day without crashing, I have been very tired and I was worried that if I did go to sleep it would be for 3+ hours.  I have had a few instances of pretty strong nausea but they were quick to swell and fade.  I was able to eat lunch and dinner though but nothing has any taste aside from this one mustard which I put on things which shouldn't have mustard on it... so it would have a flavor HA.  I am going to try and stay up until 10:30 at least so I can get a good nights sleep before day 3.  I read through all my Round 1 week 1 posts and day 3 is when things started going down hill so I am hoping I don't repeat that.  I am going to try and stay awake and continually drink water and little snacks, maybe some odwallas if I can't stomach anything else if my wife can go grab them or maybe on the way home.  As for work, on of my co-workers pointed out something today.  Going in during business hours might be a bad thing with all the germs etc around however I could go in later and do my sync up of my work and pull down the current baselines and run a few tests our licenses won't let me do from home so I am debating that approach.  Seems like we are going to get the keys to our new place early this sunday so we might be able to take a little field trip and check out the new house!  With everything going on right now with me honestly I don't remember much about the inside of the house I was distracted to say the least when we saw it.  I am also considering taking a few days off for moving next week and the following week probably as vacation days since I don't have it in me to work extra hours to try and flex that time away.  I will see you guys/gals tomorrow! (Btw google bugged me about adding AdSense to my site since I have gotten lots of hits so I figured why not.. if it gets crazy or in the way i will just remove it)

BEP Round 2 Day 1

And so it begins!!

9:15am O:0 P:0 N:0 T:0

I can honestly say today i woke up feeling 100% normal.  Good way to start the next CHEMO EXTRAVAGANZA!  I got my blood work back, first lets talk about my tumor markers:

AFP Starting [2716.0] Post I/O [855.8]  Now   [454.8]
HCG Starting [503]    Post I/O  [304]    Now   [9]
LDH Starting [290]    Post I/O  [220]    Nos   [397]

Ok so a first lets talk LDH, this is basically body inflammation level i was never all that high even with the primary.  However, I did ask the nurse about why it when UP... she basically said its the chemo causing all that inflammation in your body as it attacks the cancer cells.

Next, AFP.. this is really the highest of the numbers.  Its always been the highest and while it is going down it is certianly not tracking to its half like.  So we can gather two things from this, its is DOWNWARD trending which is fantastic.  And the second is that oboviously I stll have some active cells in my body producing AFP but we have 2 (maybe 3) more rounds of chemo to whoop up on it so I am ok with the number I guess. I was really hoping for a sub 100 number but oh well (that would have been where it was if it was tracking like it should). I made a sheet that calculates the daily half life decay of each element and tracks it over time so I can compare its projected path with what we are seeing.  This allows me to track how well the chemo is responding and how "dead" everything is inside since after its all dead it should track 100% to the observed decay curve.  See Graph:

Finaly, HCG has dropped off to nearly normal levels and probably will be by the end of this round if not sooner. (its the bottom tracking curve on the graph) It should be lower strickly speaking from the tumor decay rate but its going way down that's all that matters.

The second bit of news comes from my blood counts.  Normal Range for WBC is 4,000-10,500.  If you recall last week I dropped down to 1000! with my Neutrophills being 100! which is crazy low.  Well good news is that the nuepogen really knocked it out of the park.  My WBC is 32,500 so I am chocked full of white blood cell fun! 

The other white blood cell marker that's important is your neutophil count, normal range is 1,800-7,800 and mine had dropped to 100! So now after all those wonderful shots its up to 23,400 HHAHAHAHA. So basically my immune system is super powerful right now :-P  Made a joke to the nurse I should get some taco bell and eat it while swimming in the sewer HA.  She made a comment that I have the immune system of 3-4 people right now all shoved inside me! hahahahah maybe if there is a bad flu or something going around we should just keep neupogen on hand to boost us up :-P just kidding!!!

Anyway what that says is that 4 shots of nuepogen is probably overkill, 3 maybe even 2 would be enough so we can keep that in mind as we move forward..I will update later once I get some E/P in me!

Me in the chair today, excited about day 1... Cancer BRING IT!!! (Wife says I also look like maybe I am scared or something is about to attack me.. guess "jazz hands" don't come out well in still photos)

12:25pm O:2 P:0 N:1 T:8
So I have finished both my E&P today, just finishing up fluids.  The benadryl really knocked me out, I slept through the whole day's treatment basically.  I woke up a few times here or there but it did kick my butt pretty well.  We aren't going to do the Bleo today, I kept trying to get them to switch the Bleo days to Monday but that never happened.  So Bleo, Etoposide, and Cisplatnim tomorrow should be a long day... Oh and I get nuepogen shots on bleo days so wow that should be a busy day!

I will up date later in the day with how I feel once the premeds knock off... I put N at a 1 simply  because I should be starving right now and the thought of food isn't appetizing at all.  Hopefully that fads too so I can get some calories.  TTYL all!

2:15pm O:1 P:0 N:3 T:2
Here are the meds I am taking, premeds and then the E/P i keep forgetting to grab a pick of the Bleo since its only on there for like 15 minutes it slips my mind but I will try and remember tomorrow.

Premeds:

Cisplatin:

Etoposide:

That's the cocktail of fun for the week!



6:35pm O:1 P:0 N:1 T:2
I just woke up from an unplanned/unexpected ~4.5 hour "nap".  I remember working on the computer, I "kinda" remember eating some lunch though by how messing I ate it (ie the surrounding area) i think I started to fall asleep while eating it.  Now this isn't the first time during chemo I have had an impromptu-nap basically sneak up and wipe me out for a couple of hours. But normally those are like 1-2 hour things, this one I was out for EASILY 4 hours maybe a bit more.  Now this could just be that my body is tired and decided he needed some sleep, I haven't been sleeping all that well recently.  Or it could be this round of chemo is taking a bit more UMPH out of me than it did last time. Or it could be the Benadryl pre-med but it was only 25mg.  If you put that together with the time I slept during the Chemo session I "napped" for nearly 8 hours today!  On the plus side I feel fine, I don't have any nausea (again I rated it as a 1because I have only had a couple of tacos for breakfast at 7:30am and nothing else so I should be starving but I am not... and nothing even sounds good.)  I am going to mention this to my nurse/Dr. tomorrow during my session.  My Dr is at the main clinic on Tues/Thurs so its a good chance to get a face to face question/answer session with him.  Guess I am going to have to charge all of today to "sick" time at work because I didn't get a chance to do any work aside from read/respond to a few emails.