Friday, December 30, 2011

BEP Round 1 Day 11

I wanted to say a couple of things today about "care givers" and "the future".  Care givers are those people (or perhaps 1 person in particular) that's by your side through your cancer diagnosis, treatment, and recovery.  They are the rock that helps you deal with all the things that will be coming your way.  From trivial things like making sure you remember to take that acetaminophen dose or drink some water even when your body doesn't want to... to bigger things like scheduling appointments and talking to your nurses about things you are having issues with.  They do all those things because they love you, and they want you to get better.  But, as hard as this is on us living with cancer and living with all the treatments and surgeries... remember its very hard on them too.  They are human, and they are going to have an emotional toll to deal with just like you.

Today, after a couple hour nap I was feeling good... great I might even say.  Probably the best I have felt since I started chemo... I was in a good mood and thinking about things aside from cancer was fun and honestly I didn't even consider my treatment or the enormous financial and physical burden its taken on me.  In that light hearted mood, my wife made a comment that should have been nothing to me but for some reason I snapped back at her and ruined the moment both for me and for her.  This was a shame because it was really a great few hours before I went and ruined it.  I take full responsibility for acting like a jerk, it isn't her job to baby me and not be honest when I am doing stupid things.  Unfortunately this put a damper on the evening, I apologized later and we are better now but I could see it in her eyes that SHE is dealing with a lot too and its hard for her to not show that from time to time.  To all of you out there, remember how much you are dealing with on a daily basis... mentally/physically/etc and realize that the people around you are sharing that load and it weights on them too!  These "care givers" are nothing short of angels, they are doing everything in their power to help us and make us strong so we can fight this crappy thing called cancer... and remember that even when we are feeling like crap they are there by our side!

Now about "the future", I dont' know if I can speak for everyone out there diagnosed with cancer but I will try to just speak my mind about how it affected ME when I was diagnosed.  Honestly, after the amount of research etc I had done prior to my first doctors appointment I was 99% sure I had TC when I walked into the Dr office.  I think if that hadn't been the case the whirlwind of tests and surgeries etc that quickly followed would have been too much to handle... but I did let something subtle yet profound slip through those early days that took probably a week or so to really sink in and for me to realize it. I have cancer.  That sentence means so much, so many different things its hard to really express them all but to bound this discussion I am going to focus on how that sentence "I have cancer" affects the statement I started with "the future".  We all have a concept of what our future will be or can be, what we plan to do what we hope to do.  And cancer is a big freaking kick in the butt to most off that.  Now I am going to to make light of the fact that I do have a quite curable version, and a >95% chance to full recovery and that's fantastic.  But what some people fail to realize, perhaps its because of the work I do for NASA and our need for so many 9s of certainty that an even 5% chance of NOT being cured is a lot to deal with.  Now, I have rationalized in my head things like well "just driving to work" or "just eating at a salad bar" has X% chance of bad things happening but that doesn't seem to really work anymore.

Death is something I have never really dealt well with, mortality is by far the worst part of being human.  When you start thinking about your life and realize that planning for that house or that car or that career move in 2, 4, 10 years maybe pointless it does something to your thought process.  I consider myself a very rational person, however even a rational person has to realize there is a chance that I will die.  Consider the statistic again, ~95% survival, sounds wonderful doesn't it at face value?  Now lets set aside the months or even years of pain and surgery, and chemo, tens of thousands of dollars "surviving" will cost you... and just look at what the % means with some real world examples.  Percentages are one of those evil types of math that really lose value unless you apply them to some situations people can relate to (its often in their application where their misleading nature is amplified but lets ignore that for now).  The population of Houston metro area from 2010 census is 5,946,800 people.  If only 5% of them died that's 297,340 people.  That's a huge amount of people, but I did start with a huge number right so maybe that's not fair... something smaller.  My high school graduating class was ~1000 (I forget exactly), which means of the people I graduated with 50 would die.. that could be nearly everyone I knew on the daily basis in school dead off this "good survival" rate.  Now I am not going to dwell on these numbers anymore but I was trying to make a point that saying you have a 95% survival rate still leaves the door open for quite a bit of death to be in your mind.

Now I was pretty lucky in many was with my diagnosis, how quickly I caught it, and my test results.  I didn't have any spreading to my brain or lungs, my remote lymph nodes were nice little tiny dots and really only the directly associated RP region where it had spread.  So as a TC diagnosis goes, I am quite lucky.  But I still have months of pain and crud going through chemo to deal with (hoping none of the bad side effects like pulmonary toxicity or leukemia or tinnis or nerve damage set in) then assuming I don't have any >1cm LN left and I dont' have to do the crappy RPLND surgery its mostly a waiting game.  But, considering the teratoma in my primary... and the fact that recurrences are not that uncommon from my reading online my guess is that EVEN if I make it through this... this "cancer" thing will be in my life for years even decades to come.  This is going to take an evolution of who I am to allow my life to continue and my life to flurish knowing this.. and I think that's the REAL journey ahead of me... making that transition.  Transitioning to a version of me that knows this information, processes it, and then continues to move through life without fixating on every detail of it.  Anyone who knows me can attest tot he fact that I am quite a bit OCD, and I actually pride my self on my "focus".  When I was a child my focus, or lack of it, was a significant problem.  However, in my adult life I have learned to take that crazy OCD, bounce around energy and focus it onto something and by doing that I am able to really delve deep and do great things.  At work I love focusing on "the next problem" digging into it from all sides analyzing it, going to meetings, coding up solutions, talking it through with my coworkers until we have destroyed it!  In my personal life I do the same thing, I find something interesting I focus on it learn as much as I can about it and do my best at knocking it out of the park.  With cancer I am having to modify that approach, I have tried "focus" and it seems to mostly lead down rabbit holes I do not want to go down.  The initial diagnosis, surgery,and even the first round of chemo (nearly done with btw!!) was almost mechanical.  I did it because it needed to be done, we found this.. next step is this, then we do this, next step is this.. easy no room for worry no room for concern.  But the long term physical and psychological aspects of LIVING with cancer and living AFTER cancer are something I am going to have to learn and grow and develop over the coming months/years etc.

To those of you out there reading my blog going through TC as well just take this post as a "we all feel like this from time to time" type thing.  You WILL have these feelings, you will have these thoughts... what's important is that you just accept that and work through them.  Talk with your family and friends about it, or whatever you need to do in order to work through it but do NOT ignore them because they will crop up when you are feeling down after a round of hell week.. and that's not the time you want to be trying to wrestle through these things.

Goodnight all, have a wonderful New years!  I will probably post again after my next Bleo dose and then when I get my followup with my Oncologist.  During these "off" weeks my plan wasn't to post everyday just when I feel like there is something worth sharing that pops ups so if you don't hear from me for a few days.. all is well :-P

Wednesday, December 28, 2011

BEP Round 1 Day 9

Brief post today I mostly just wanted to talk about "tiredness".  So over the last couple of days I have started to feel a bit more normal, that is not like I am assaulting my body with deadly chemicals on a daily basis with one exception.  Yesterday, I was feeling fine so I thought we could take a little trip to pick up some things with xmas money, felt fine driving there, but as I walked into the store I got more and more tired.  By the time we got to the back of the store (maybe a couple hundred yards) I felt like I had run a marathon.  Similar thing today, I felt fine when I woke up almost like it was any other day... then I started moving around the house doing regular things and BAM I had to sit down because I was exhausted like I had worked outside digging ditches for 5 hours. So that brings me to my tip for today:

TIP: When you are on your off weeks, PACE YOUR SELF.  Even if you feel like you have a normal amount of energy your reserves are very low.  Don't over do it!  Honestly I feel like I am 80 years old and getting up to run to the store for a gallon of milk or something is a huge production because I might have to take a breather.

As the week goes on, and as my stomach starts settling (its better btw but not perfect yet) and I am getting more food hopefully this will all fade away too but just keep in mind to yourself if you are going through this.  Your body is fighting a lot right now, cancer, chemo fighting the cancer, and just overall tiredness from a different nutrition spread than you are probably used to eating.  So take it easy!

Tuesday, December 27, 2011

BEP Round 1 Day 8

Good morning. So today is a Bleo day. That means just the one chemo treatment and a week off!
9:00 AM O:4 P:0 N:1 T:0
So I have been fighting an angry stomach for several days now. Today is no exception. It doesn't agree with anything I eat or even like water/crackers. I am talking to the nurses about it today to see if we can get some solution to it. That's why my overall rating is not great even though the rest of the ratings aren't bad. They drew blood today to see how well my white/red blood cell count has held up from last week.  They also weighed me and I have lost 8lbs, no fun. I will attribute at least half of that to the last few days issues but obviously they don't want me losing weight so I am sure I will get a talking too ;-)   Its the new Hollywood fad diet CANCER+CHEMO = Summer body!  As I find out more I will update the blog.
Got my white/red blood cell count back and I am good.  Both are steady, that's a good thing because being able to handle the first round well means hopefully I won't need a transfusion down the road in the later rounds. 

11:25 AM O:1 P:0 N:0 T:0
Back home, everything went well Bleo wise.. its quite a small dose must be some potent stuff!  Most of the time was spent hydrating me with fluids and then the pre-meds.  The Bleo dose took ~15 minutes or so, now I am back home.  We just need to stay on acetaminophen, for the fever/chills, and we added a few new meds for my stomach per the nurses suggestions to hopefully help on that front.  I am going to try and eat somewhat normally today, like yesterday, as much as I can and see if the new meds help calm my stomach etc.  Great news is that I get a week off chemo!  Now I need to focus up on getting this house packed and ready to move hahahaha.

Monday, December 26, 2011

BEP Round 1 Day 7

I wanted to throw up a status for all you guys following me, I don't have any chemo today (tomorrow I have a Bleo dose).  Today my stomach is rebelling pretty bad, not sure if I just over did it with xmas food, I tried to be conservative, or if this is just how I react to BEP.

I am going to take it very slow on food today, and eat light and easy to digest things.  Also, I am going to drink a lot of fluids to help continue to flush this stuff out of my system and prepare for tomorrow's dose.  If I had any advice to give for the few days after your hell week it would be these three things:
1) Sleep, and let your body recover.
2) Drink lots of fluids and eat light easy to digest things.
3) Stay on your meds even if you don't think you need them.

I don't think I had a full normal day ie O:0 P:0 N:0 T:0 but I had some decent points on xmas where I didn't feel too bad and that's about as much as you can ask for going through this I guess.

 The last week or so has made me realize I am going to have to rethink my approach to "working" while going through chemo a bit.  I am going to have probably work light weeks of ~20 hours during the hard weeks (if that) using some sick days here and there and just make up time where I can.   I think I am also going to work from home alot more than I had originally thought.  I was going to try and go into work pretty much whenever I felt I could, but I think it would be better for me to stay home most days and work from here.  That way if I start feeling bad or need to take a break I can do an hour or so off relaxing or whatever then get back to it.  My office has been fantastic about this whole thing so I am sure it will not be an issue.

I will of course give you all an update tomorrow during/after my Bleo dose which I am hoping goes easy. As an FYI today is my wife and my 2 year anniversary! I love you dear, and again thank you for all your support through this.

7:00PM O:1 P:0 N:1 T:0
So everyone this is probably the best I have felt since I started chemo.  I took it easy today, and rested and drank my weight in fluids :-P.  My wife got me lots of very mild chick broth/chicken/rice to eat which helped settle my stomach, and I mostly just laid around and watched netflix/hulu etc.  I do feel a bit stir crazy since my last day of hell week I have spent so much time sleeping etc but I figure if its what my body needs why not.  Anyway, I am hoping tomorrow's Bleo dose is uneventful aside from some mild tiredness I can see maybe being back to "normal" by mid week.  We are actually moving in a couple of weeks so its important that I can get up and moving around to help pack everything up.  I am REALLY looking forward to our new place, its much more of a "home" than this house is we are currently in right now.  I can't wait to be there, and be closer to work etc so my wife and I don't have an hour each way commute to work and back everyday. As of right now I think I am going to take the first few days of Jan off and work from home then play it by ear. Thank you all again for your support and your continuing awesome comments!!

Saturday, December 24, 2011

Xmas Eve - No Chemo

I wanted to throw together a short post for today for all of you that have been following and wishing me well.

10:00am O:2 P:0 N:2 T:3
I have pretty much slept since my last post. My wife woke me up to take pills when I needed too but aside from that I wasn't able to do much but sleep. I have never been so tired. The good news is that I am feeling better this morning, I think the Dex really helped with the nausea there was a point last night where I probably peaked around an 8-9 and really did nearly throw up (sorry not a pleasant xmas time picture). However, getting close to 13 hours sleep and staying medicated seems to have really helped me turn the corner. I have began to realize a pattern in my chemo days where I wake up cruddy, get premeds and feel better, go home "decent" for the first few hours then as things wear off it gets bad at night. Last night was no exception and it was the worst yet. However with a few days off chemo, hopefully I can get some strength back before my next Bleo treatment (which should be a walk in the part compared to the week long E/P sessions).

TIP. For all of you out there that are going to have to go through this, the biggest tip I can give you today is that you need someone with you that cares about you and will take care of you through times like I just had over the last 16 hours. My wife is that person for me, and I wouldn't be able to make it through this without her... help is ok even for us guys that don't like asking for it :-P

I am not sure if I will post again today or not, if I don't Merry Xmas to you all and thanks for all the prayers/well wishings/and good thoughts my way! A part of me knows the worst part of this chemo round is over and the next 3 weeks should be much easier... but at the same time I know I have 2 more full rounds of this to get through and chemo is cumulative meaning that rounds 2 & 3 will be harder on me... fingers crossed but with my wife's support and maybe some new meds from my Dr I will make it through the other side of this!

Friday, December 23, 2011

BEP Round 1 Day 5

Feeling bad, I will update later after I have premeds in me.  I woke up this morning probably at a O:6 P:0 N:7 T:8

9:45am O:3 P:0 N:4 T:6
Short post for now. Got my premeds, feeling better but not great. Couldn't eat anything this morning. However, jenn brought something once I had my premeds and I ate most of it. Chicken, spinach, and rice. I would add this word of advice, at least for me the couple of hours after "premeds" are my best of the day usually so take advantage of that and eat while you can. Also never stop drinking fluids. I think my main issue yesterday with mouth sores (which I still have) was due to eating then not Washing out my mouth AND not drinking much since I was asleep for most of the day.

10:45am O:2 P:0 N:2 T:7
Overall I am feeling better. Nausea is much better as well and eating helped earlier. Still very tired due to chemo and the lovely Benadryl. I just keep telling myself today is the last day of "hell week" just gotta make it through. Does worry me a bit that the next two rounds will be worse but I will tackle that when I get there.

12:25pm O:1 P:0 N:1 T:4
Hey everyone I am feeling much better. Still super hungry but we are going to see what I can eat when we get home. craving cheese for some reason. Cheese pizza, cheese enchilada, or cheese burrito something. So odd. Anyway I have developed a new thing, my right hand is quite weak. Ie I am having a hard time squeezing the little ball thing you get when you give blood. Fingers seem fine (which would be more expected from the plat) but overall hand compression is shaky and difficult.

1:15pm O:1 P:0 N:1 T:2
WEEK ONE DONE! So its official I survived my first "hell week" of BEP chemo. Now I still have my pre-meds in my system right now, which is why I still feel good BUT hopefully with the added new meds they gave me i can help taper off to a "decent" level and not crash. I am going to go ahead and dose to Dex tomorrow and xmas to help keep me good through the holidays. Maybe by the time that wears off i will have recovered a bit. Anyway, great news is I don't have any chemo tomorrow or for 3 days even. It will be a nice break my body could use it.  Here is the "chair pic" of the day, granted not that over joyous in the pic but steadfast and holding in to the end! :-P  I also want to say a HUGE thanks to my wife, she has been amazing through this week and I couldn't have done it without her... even when I was a bear sometimes or less than cooperative she helped out and got me through it.

7:35pm O:5 P:0 N:6 T:4
So I am getting that sinking feeling that usually comes in the evenings as the nice "pre-med" cocktail wears off.  I have taken the new nausea meds, and everything else but it doesn't seem to be keeping it at bay.  My stomach is very sour, I feel like the wrong smell or random thought of some type of food could cause bad things to happen.  I am tired but its more of an overall body ache like tired, not really a "sleepy" tired.  Sleeping doesn't feel like it would help because it doesn't really seem to correlate to any physical thing.  As an example I took a ~hour nap earlier and woke up worse.  So that's 2 out of 3 for that tactic.  Seems like yesterday the afternoon nap helped but the day before and today it seemed to only make things worse.  Jenn is being great, she is making cheese enchiladas which I was craving so bad I am hoping I can still stomach them.  At this point I am not sure what to do to make myself feel better which is the most annoying thing of all.

Thursday, December 22, 2011

BEP Round 1 Day 4

Morning all, not feeling so hot today gonna keep this first post short.
7:30am - O:4 P:2 N:4 T:3
Well I am going to attribute a lot of this to me, sleeping past 5 Med reminders. I mean they went off, I saw them.. I press snooze and went back to bed. I did that nearly half a dozen times on some of them so i don't have anyone but me to blame for missing them. The "sleepy mind" isn't always the most rational :-P . One of which, my nausea one, I am over a hour behind on and other one is my Ativan which plays into the "feel good" and nausea side of things. Goes to show. "Wake up and take your meds Earnest!" Anyway, today is a later session it doesn't start until 11am so I thought I would sleep in. I took everything and I am going to try and eat something small and lay back down for an hour or so. Still a but worried that I don't have my ememd to predose today with but we will see how that's goes. Btw if you notice this is the first day in a while I have put a "pain" rating again. Abdominal pain is back BUT I am hoping its related to "other" items I have yet to complete this morning =-O.
8:15am - O:4 P:0 N:5 T:3
I was starving but I couldn't really stomach much. So I had 1 Amy's burrito over the course of about an hour and a half one bite at a time. That's all I could do and "keep it down"
9:25am - O:3 P:0 N:3 T:2
So the hospital just called me, and apparently even though the printout WE have shows 11am for my treatment someone changed it to 8:30am. So they called wanting to know where I was. Urgh, I hadn't taken a shower or really gotten ready in fact I was laying down for another little nap when they called. Jenn also has to drive all the way back from work ~40 minutes to come with me... all of that was fine when we planned it to happen at 11am. Oh well, roll with the punches I guess. She is on her way now, and I am ~ready to go, wish I could have eased into it a bit more but C'est la vie.
10:45am - O:4 P:0 N:4 T:2
Just got started with the pre meds. Yesterday these perked me up, I am hoping for a similar reaction today.
1:15pm - O:2 P:0 N:1 T:5
Sorry no updates but I have slept most of today. I came in wiped out and the Benadryl did me in. Good news is I feel much better over all. I am obviously still quite tired but my nausea is very low. I think the premed stuff really works well. Wish the stuff I had at home was that good.  Well my guess is after I am done I will be taking a nap at home too. I will post later though.
3:40pm O:2 P:0 N:1 T:3
So unfortunately mouth sores have set in. I am done for the day but I noticed my tongue felt odd and checked it before we left and its covered in sores. They don't hurt yet but the doctor came down to check and he said they will if I don't take care of them asap. So time to gargle lots of salt water and bakimg soda. I also have the "magic mouthwash" so hoping we can get this under control NOW.  Today was so so, I figured this pose would accurately represent the outcome :-P

Not for the faith of heart perhaps but here are my sores, we will get them under control though!
So I used the magic mouth wash and it did help but it also numbed my whole freaking mouth and lips and everything HAHAAH perhaps overkill for this stage.  I will stick to gargling salt water and baking soda for now.  I think since I slept most of today's treatment and woke up a few times to snack etc but never brushed my teeth in between that's what made this worse.  I just need to be more diligent about after every time I eat I brush and do a mouthwash.

8pm - O:4 P:0 N:5 T:3
So after all my gargling etc my tongue really isn't that much better. I got a couple of new nausea meds one I can spread between my Zofran called Phenergan so we will see how that works. Then another we can bring in as "big guns" if I am still having issues Dexamethasone.  Now that Dex is part of my pre-meds and my nurse thinks its one of the ones that's pulling me back from the "blah" in the morning to feeling better.  However because of its potency my Dr doesn't want me using it unless I need too (odd that I am getting it in my pre-meds already but hey he's the Dr. :-P )  As for my overall "feeling" I don't feel much better than I did my last update.  I am really really hungry, but nothing is appetizing and everything is hard to eat/keep down.  I would love to take a big yummy bite of something but I know that 5-10 minutes later I would feel like crap because of it.  Sorry this wasn't a more positive post, however one good thing to look forward to is that tomorrow is the LAST DAY of this "hell week" round so if I can just maintain this level of crappiness for a few more days then I should start getting better mid next week.  Here's hoping!

Wednesday, December 21, 2011

BEP Round 1 Day 3

I am adding a 4th "ranking" to the P(pain)N(Nausea)T(Tiredness) set. After last night's crappy feeling not really fitting well into any of those categories I am going to do just an O (Overall). So an O of zero would be perfectly normal, and a 10 would be I feel like I am about to explode into thousands of little space slugs bent to take over the world (slither reference look it up) . HAHAHA I dont' know what a 10 would be, it would just "bad". So for example, I would have rated last night's "urgh" feeling as a O:4 P:1 N:5 T:5. Overall tired, light body ache, feeling like any stray smell could have made me vomit and just overall crappy feeling. Oh and my scale is linear not logarithmic, ie 4 is 2x as bad as 2 not 100x as some scales do it. So here we go with Day 3.

6am - O:2 P:0 N:2 T:0
I feel like I have recovered A LOT from last night. I still don't feel perfectly normal but I am much better. Chemo doesn't start until 9:30 so I have a bit until then. I am trying to wake up and have a somewhat normal schedule even on days where my treatments aren't consistently timed. I know I still show a 2 on my overall but I debated a 1 there. I still have a pretty bad taste in my mouth but the smell trigger thing seems to have gone away.

7:15am - O:1 P:0 N:3 T:0
Ok let me start off by saying my favorite things for breakfast are eggs and bacon. If you put them in a breakfast burrito with some salsa or on a toasted bagel I am in heaven. Now yesterday I made a bagel for breakfast for myself while I was feeling so good in the morning. I thought I would try that again this morning. Well, lets just say a N:2 is probably my limit for doing that. I didn't have any issues with smells while cooking it, in fact it smelled great. However while cooking it I had some juice and some ginger ale which didn't sit so well. I took a couple of bites once i was finished with it to "test the waters" and the first couple were ok but I got about 60% through it and I had to stop. It tasted good, it smelt fine it just wouldn't seem to keep "down" it felt like everything I ate just sat in my esophagus waiting for a chance to run away! I forced myself (maybe not the best thing) to eat the rest of the bacon out of it for the calories/fat/protein because I knew I hadn't eaten much yesterday. All in all it worked out ok, but if I need to take my nausea feeling a bit more seriously. My dosage of Zofran was RIGHT before I ate, maybe if I had waited an hour after I took it it would have helped. On a positive note, once I was done eating I felt much better and cleaned the kitchen, loaded up the dish washer and sanitized the cabinets. Jenn does so much for me right now, its nice to do a little while I am not feeling horrible. Bring on day 3!

11:45 - O:3 P:0 N:3 T:6
Going well. Burned through the platinum easy. Started my friend the Etoposide at full 400mlph (Full for ME that is, since I think its supposed to be like 543mlph standard but that just turned me into a lobster so .. HAHAHA) from the start. About 5 minutes in I got some mild tightening in my chest. Thinking back to my days with asthma its sort of like a very mild attack but not bad certainly managable.

TIP!!: So I just discovered that my pepermint hand Sanitizer is a great cover up for all those offending smells out there. If I spray it from about elbow down on both hands the smell is strong enough to drown out everything else. Granted I smell like crazed Xmas killer that uses pepermint sticks shaved into blades to dispatch my victims but hey it works O:-)

1:25 - O:1 P:0 N:1 T:2
Wednesday is done!  Actually I feel quite good right now, probably still have some of the wonderful "pre-med" mixture in my veins so that's helping.  But I don't really even feel that tired from the Benadryl which is interesting.  I had a couple little itchy/shortness of breath for a few seconds with the Etoposide but all in all today went really smoothly.  We shall see how the next several hours plays out since yesterday I just crashed out of no where and woke up many hours later HAHAHA. Anyway here is your pic of the day, me trying to deal with the nausea issues with some wonderful metal flavored crackers (think about it for a second) and some ginger soda.

Oh and here is a pic, courtesy of my wife, of the peppermint spray I am using from Whole Foods that's doing such a good job of drowning out all the other bad smells.  Now I am using it every 30-45 minutes from the elbows up so I am sure i will burn through them but its really helping so we thought we would share:

6:10 - O:1 P:0 N:0 T:2
So this is the second day in a row I have basically "crashed" for a few hours in the afternoon.  I knew it was coming this time and went and laid down in bed and set an alarm.  Woke up ~2 hours later and I feel much better.  Honestly, this isn't a big deal in my book.  Overall I am handing the chemo well, AND I am taking these dern Benadryl shots each day so for me to need a little nap in the afternoon to reentergize I figure why not.  If it starts getting excessive and I am sleeping 4+ hours in these "naps" then I will reconsider it but right now I think its fine.  I feel great right now, no nausea, no pain, a little sleepy (I mean I did just wake up!) and overall a bit blah but not too bad.  Now I just need to get active, get my blood pumping and maybe eat some beets to boost my iron!

===== Day Summary =====
O:2 P:0 N:3 T:4
So today started out sort of on a stinky note, I wasn't feeling all that great and I had a hard time downing my breakfast.  However, once I got the pre-meds in me before they started the chemo I was feeling MUCH better.  The steroids and the IV Zofran turned me around quite a bit.  The platinum went quick and without incident (aside from the taste it gives to everything like metal crackers).  We didn't "ramp up" the Etoposide today and just started at the 400 speed and aside from a few little shortness's of breath and some red/itchy on my chest/neck it went pretty well.  I discovered soaking my hands and arms in a peppermint spray pretty much takes the "smell" part out of the nausea at least for 30-45 minutes at a time.  I took a nap in the afternoon, which I might make a common thing it seems to help as long as its bounded and I drink fluids before hand to keep from waking up over dehydrated like the first time.  I ate pretty well for dinner and probably over ate, my stomach is a bit upset now with that feeling from the morning where everything is right at the TOP of my stomach waiting to get out but its manageable. Overall I think it was a good day, learned some lessons for how to approach the coming days/weeks/months.  My only concern going into tomorrow is that I don't have an Emend predose, its only a 3 day dose pack for a 5 day schedule.  I am hoping I don't have a big ramp up in the nausea tomorrow, fingers crossed!

Tuesday, December 20, 2011

BEP Round 1 Day 2

I had some issues with the web interface on my Xoom, and the android app is a bit limited on how it allows you to do updates to existing posts (stupid inline HTML tags which are hard to touch type on a screen).  Anyway I am going to just post in pieces throughout the day but I am going to maintain the actual log in a separate file and just update as I go pasting into the app.  See if that makes it easier.  Also, the web interface doesn't get androids spelling auto correct which I seriously NEED.
7am - P:0 N:0 T:0
     So woke up this morning and honestly I feel 100%  Now granted I probably slept (due to the Benadryl 14 hours at least yesterday if not longer).  However I do fell good, that nasty taste is still there but its much less pronounced.  I am sure it will get stronger throughout the day.  I made my self a egg and bacon bagel sandwich for breakfast and it was yummy (figure i would take advantage of the lack of bad taste in my mouth). I am also changing up my bag of goodies I am bringing today.  I am NOT going to bring my laptop at all because I have the Xoom and my phone and honestly I never had a need to get it out.. and its kinda heavy anyway. I am going to talk to the nurses today about just re-accessing my port each day.  Its only like 10 seconds of pain when they poke me, and instead the left the whole thing in me and taped it all up.  It has been so itchy and just a pain in the butt all day its like the size of a tennis ball nearly urgh.  We will see what they say, 10 seconds of pain vs a whole day of this crap I will take the former.  I am also going to see if they will try a half dose of Benadryl and see if I can handle the Etoposide... the Dr said I should get better with my reaction after each doze and WOW does that crud knock me out all day.  My session doesn't start until 9:30am so I will cya guys later!
10am - P:0 N:0 T:0
      Started the pre meds. We downed the dosage of Benadryl to 25mg from 50mg yesterday to see how I react. The 50 made me worthless through most of the day so maybe this will be less intense but still be enough to keep away the reaction from the Etoposide.
11:30 - P:0 N:2 T:4
       Benadryl is certainly there but its not as strong as yesterday. About to finish the platinum, and switch to the etoposide. We are going to start at a slower speed at first since I am doing a lower dose of the Benedryl. Seems to be working well, we are going to up the speed now.
12:00 - P:0 N:4 T:4
        \0/ running at the 400mlph speed on the lower dose of Benadryl and doing fine. Nausea is up, a bit hard to explain really. The medicine/metal taste is much stronger and my stomach is more bubbly. Ground up cruddy medicine and flakes of aluminum foil swirling around in your mouth.. that's the best way I can describe it.  Back to "Lets Golf 3 HD" which rocks on the Xoom btw!
2:00 - P:0 N:2 T:2
        That's all folks, all done with day 2.  Everything went great.. I had a little bit of a flush to my chest toward the end of the Etoposide but since I was actually able to FUNCTION on the 25mg instead of the 50mg dose of Benadryl I am going to try and stick with that.  Doctor says that I might even be able to go off it totally once my body gets used to it.  Anyway, another great thing.. I got them to remove the "harness" from my port.  They left it in last time because it keeps them from having to stick me every day to access it.  But honestly its bulky and the bandage is all in the way and itchy so I would rather have it this way.

Pic of a victory over day 2!

And picture of my port today, some bruising but all in all its looking much better!

I will post a summary at the end of the day but right now I feel perfectly fine aside from the left over sleepiness from the Benadryl but its not too strong maybe a 3-4.

7:00pm - P:0 N:1 T:8
      So, I just woke up.  I had no idea I had fallen asleep and the last thing I remember was at ~3:30pm to 4ish.  So either the Benadryl kicked in a bit or my chemo session today caught up with me.  My guess is that I was out for at least 2.5 hours maybe longer.  Since I have been drinking a huge amount of fluids missing that many hours has made my mouth super dry and nasty tasting.  So I am trying to alleviate that with lots of water. So odd because my last post I felt 100% fine just with some lingering mild tiredness.  Guess that goes to show you when you are doing chemo, especially the first "hell weeks" your body can give out at any point and shut down.  I am starting to feel better, drinking water etc and my temp did go up a bit while I was asleep ~1.2 degrees (remember I had my Bleo yesterday so that's not unexpected) I may have missed my Tylenol dosage depending on how long as I was out so I went ahead and took that and I will check it again in an hour or so and see if it fell. Never a dull moment!!!

===== Day Summary =====
Decent overall day, my reaction to the Etoposide was controlled with a lighter dose of Benadryl which helped me not be dead to the world all day.  I have a few small instances of nausea but again I think keeping on my med dose schedule EVEN when I don't feel I need it is doing wonders.  I did have an instance where later in the day I just passed out for a few hours.  That could have been from the Benadryl or maybe just from the chemo in general.  As the night progressed I felt worse and worse, sort of like the flu.  Body ache, and smells etc would set off nausea, and I feel all over tired.  Nothing specific but I don't feel well, if I wasn't going through Chemo/Cancer i would think I am sick so not sure how to deal with it.  Hopefully I will feel better in the morning for Day 3.

Monday, December 19, 2011

BEP Round 1 Day 1

I am going to update this throughout the day. At the start of each log I am going to put a rating of pain, nausea, and tiredness like this P:X N:Y T:Z. All on a scale from 0-10.
7am P:1 N:0 T:0
Woke up and started taking pre meds. Lower back still a bit of a dull pain but nothing major. Thankfully I have Emend which I have read online is a Huge help. Chemo session starts at 8am.
8:30 P:1 N:0 T:0
Starting, just putting in the antinausea stuff right now but here is a pic: FYI "accesing your port" is not painless even with the numbing stuff
9:30 P:1 N:0 T:0
Officially started chemo, they just started the Cispatin bag. Platinum not only looks good in your grill or around the neck of your main squeeze it can fight cancer too. Who knew! :-D
10:47 P:1 N:0 T:2
So I have a reaction to the Etoposide. They started the drip, and a few seconds later I har a hard time breathing then got flushed. Jenn ran to get someone and a minute or so later i lelt like I was on fire everywhere.  They stopped the drip, gave me some oxygen and some and a few other things.  I am fine now but getting more and more tired. They are going to wait a few minutes and try again. Fun times.
1:00 P:0 N:0 T:8
So the Benadryl whooped me up but I am handling the Etoposide now just at a slower than normal rate. Oh and I will be getting my Bleo today. Funny enough the doctor says my reaction is actually to what the Etoposie but to the solution its mixed with. There is another chemo drug with the same mix solution that causes people the same reaction he says. Interesting. Well if you are going to have a reaction at a hospitol is a good place for it.
1:15 P:0 N:0 T:9
Still getting destroyed by the Benadryl.  They did a test run of the bleo (small dosage) to make sure I could handle it.  All went well.  They gave me the full bag.  I don't remember much of this since i was asleep nearly the whole time.
2:30 P:1 N:0 T:4
All done day 1down 20 more to go :-P I will post some pics later
6:00 P:0 N:0 T: 6
Doing ok at home, my taste is already all messed up.  I have a nasty metallic/medicine taste in my mouth.  Have you ever had a nasty knock off "medicine" and that odd taste it has in your mouth before you swallow it?  Its kinda like that grinding up one of those pills and adding metallic flakes to it.. then coating your mouth with it.  Everything taste like it, even water.  Also I have some tiny sores on my tongue but I gargled some salt water and hopefully that will help.  Side note, gargling salt water does remove that taste for 5-10 minutes but it tastes horrible too HAHAHAH.

===== Day Summary =====
All in all I think it was a pretty good day, aside from the crazy over tiredness from the HUGE Benadryl I feel decent.  Some slight nausea overall but I think the meds are really helping me there.  So far no sign of the "Bleo Fever/Chills".  Just that one bad reaction to Etoposide's solution medium, the Dr did say that usually people's reaction to it goes down over time so maybe after this fist hell week the next round I won't need the Benadryl which would be nice.  I am going to have a light dinner, watch some TV then get ready for day 2!

Sunday, December 18, 2011

2 days after port install

Changing the bandage to get ready for chemo tomorrow. Looks like a surgically implanted pimple hahahaha


Last Beer for a while probably

Thought I would have something decent, since I should not be drinking during chemo for many reasons.

Good Ol' 90minute


I had maybe 3 drinks of it, not appetizing at all. My body disliked it. Oh well.

Pre-Chemo Shopping/Errands

So my wife and I are about to head out to fill the coffers with everything we need to make next week easy on both of us.  We are going to compile a list, and once I get all the things I will post it up here for everyone.

My goal is to cover all my bases, gaming, movies, sleeping, snacks, "issues" etc so we can be prepared for whatever happens.  The first few days we are probably going to forgot things and realize there as really no reason to bring the "talking big mouth bass" no mater how funny we thought it would be. [Just kidding of course]  Once we get the list all together I will share it.

On a side note, I have noticed some dull pain in my back over the last few days.  This could just be from the stress of all of this or it could be from the swollen lymph nodes from the cancer.  I will mention this to my Dr on monday, I have some pain meds left over from the I/O and I am taking ~1 a day which seems to be taming it for the most part.

Saturday, December 17, 2011

After Port Day 2

I have had my phone AND my laptop freeze up while trying to type this post.. so this will be the my third attempt hopefully it works this time!

Pain wise I am doing "ok" its probably in the 3-4 range with an occasional 5 if I move funny or extend my arm a bit more than I should. It does still feel odd to swallow or yawn or laugh etc because I can feel the little cathedar right next to my throat but the doctor assures me you get used to it and can't feel it after a while.  I am also having some lingering 1-2 pain with spikes into 4ish from my I/O after I over stressed it a couple of nights ago.  Basically I tried to roll over in my sleep and my leg has to push through the covers to turn me over which pulled hard on that region.  I woke up in pain probably close to a 7 quite honestly but it only lasted a minute or two and went down. That being said I am taking a bit of pain medication, and my Ativan today.  I have to say Ativan is really what's making it possible to cope with all this, I had to go totally off of it for 18 ours or so before the surgery and I was shaking and very stressed.  Anyway all is fine now, this is all alot to deal with especially for someone like me who is a "worrier" so its nice to have something to help calm me down.  I would describe it as a MUCH less potent version of Ritalin.  Ritalin was night and day for me, taking a pill of that made everything clear and my mind was 100% focused... Ativan is more of a happy feeling and instead of making you clear it just makes the bad stuff less important so you don't care as much about it.

 I got a special card I have to carry with me now that describes it for medical people.
Always said I wanted to be a Cyborg, guess this is a step towards that ;-) Oh for all of those people thinking of getting a port let me say this on placement. They will put it on either side BUT, right is easier and less wires running under your skin and the left side one interferes with your seatbelt that's why I went with it on the right. Have to retrain myself to not carry my computer on my right shoulder.

As for the port its doing well, minor swelling I have used an ice pack twice when it felt a bit puff or "warm" to the touch.  My temp did go up slightly by a degree or a degree and a half for a couple of hours last night but it went right back down.  We were monitoring it closely and had the phone ready to call the hospital. I did take a shower with it covering it in saran wrap which was a pain but I needed the shower. Here is a current pic of what it looks like today

As for getting ready for Chemo, my wife and I are getting the house ready and getting together a list of all the things I need and having them out and ready for me.  We are also making a nice grab bag of goodies for when i go in for treatment.  Her boss loaned us his Xoom (Which he purchased and never uses I guess), I unlocked it, rooted it, and now I have netflix/hulu/hbo go, and lots of games etc.  I even put a full desktop install of ubuntu on it in case I wanna play around with that.

Some good news (unrelated to cancer etc) we got approved for our new house down in the Bay Pointe area in clear lake.  Still leasing, I think owning is just silly unless you wanna stay somewhere more than 5 years and jenn and I like to bounce around and try new places and new things.

Friday, December 16, 2011

Just got port-a-fied

I will update this later but. I am out, got the port and they did it with me awake which was interesting to say the least.
Here's a quick pic I snapped.

So that was interesting.  I was expecting to be put under, wake up and have my port.  But apparently, that's not how they do it anymore at St. Luke's.  So basically they shaved my chest, and got me all ready.  Then they give you a half a dozen or more lidocaine shots around your chest and neck.  These SUCK, basically it feels like somewhere between a bee sting and a wasp sting but MUCH deeper.  So they prick the surface then it spreads down into your neck/chest.

Honestly that's really the worst part of the whole thing, they give you several "happy juice" shots into your IV.  The first couple kept my hands from shaking but after the 4th one I was perfectly fine with whatever they wanted to do to my neck!

My Dr was great he talked to me through the whole thing, which was great because it was hard to just sit there while he dug around in my chest for my veins :-P.  There were some uncomfortable moments to be sure, and I can still feel it when I swallow or cough etc which they said was normal.  There is nearly zero swelling and its looking really good.  I will upload a few more pics, as the bandages come off and of course after my first chemo day.  After all the vein poking on my arms over the last few weeks this thing is gonna be my new best friend I am sure.

Ports away!

Here we go driving to the hospital to get the port installed. Cya on the other side.

This is much less organized IMO, I feel like I am checking in for a hair cut or something. This isn't a minor thing, its hooking up to major arteries and could cause many issues is done wrong. Maybe I am just in a sour mood :-P

Btw 4 tries to get blood sheesh people B-)

Thursday, December 15, 2011

Hello awesome hats!

Besides, I can always rock the fedora. Take that cancer, I see your malignancy and I raise you some STYLE!!!  B-)

Beating Chemo to the PUNCH!

Not that my hair was all that long to start with but, I figured I don't want to wake-up one day, approximately 16 days from the start of chemo I have read, and be in a pile of hair like a moose (look it up)  so I took the proactive approach and just went military cut. 

And So it begins!

So a little background I am 31years old:
11/10 - Noticed something "off" about one testicle a bit stiff and larger than it should be.. thought I wacked it or something but scheduled an appointment with a Urologist to be sure.

11/21 - Appointment, Dr concerned ordered ultrasound/bloodwork. [Dr Renner is awesome, moved very fast on this!]

11/22 - Ultrasound showed mass, Dr setup surgery for 11/25 (soonest available due to thanksgiving)

11/25 - Left I/O and blood work came back AFP:2715, HCG:503, LDH:289
- AFP quite high indictive of tumor [sitting in surgery prep when told this so.. in the right place!!!]
- HCG again high like AFP
- LDH a bit elevated over normal [0-225 normal]

Tumor Makeup
- EC 45%, Yolk Sac 40%, Teratoma 14%, Sematoma 1% w/ LVI
- Tumor Confined to the testis
- No invasion into rete testis, epididymis or spermatic cord

Spent that week recovering, much more pain than I read about on the forums its not a fun experience! Had my CT scan done mid week, doctor wanted to get the I/O ASAP and with the thanksgiving holiday getting a CT in and then the surgery would have pushed it back. Regardless fo the CT results the same I/O outcome would have been warranted so we went ahead with the surgery before the CT.

12/1 - CT Results
Chest, Lungs, hilar, axillary, supraclavical all CLEAR!
Retroperitoneal lymphadenopathy several enlarged lymphs largest 4.2cm w/ several <1cm other instances of swelling
Liver look good!
Kidneys show lobulated borders, but no masses
SUMMARY - "No evidence of metastatic disease", Borderline lymphadenopathy

12/8 Onco Appointment 
- 3xBEP starting 12/19 [taking cancer DOWN!]
- #s AFP:855, HCG:304, LDH:NORMAL!

-  This is great because my AFP is really dropping like it should.  HCG is sticking a bit more than I would like, but that's what the chemo is for!

I have a thread where I am talking through some of this stuff in more detail over at which is an AWESOME site.

My Brain MRI came back clean so that was great news EC likes to be sneaky sometimes.  I have my port setup for tomorrow (Friday 12-16) then my chemo starts on monday.  I will try and post through all of this, port, chemo days, etc through the next couple of months.  Hopefully my experiences can help other people out there going through this.

I think I am a pretty light hearted guy, but if you follow all my posts I will let you know now that I will be honest about how I am feeling so it might not always be rainbows and unicorns!  Let the fight begin!