Tuesday, February 21, 2012

BEP Round 3 Day 22


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

Wednesday, February 15, 2012

BEP Round 3 Day 16


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.

Monday, February 13, 2012

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.

Tuesday, February 7, 2012

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)

Saturday, February 4, 2012

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...


Thursday, February 2, 2012

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!

Wednesday, February 1, 2012

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!