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

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!

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.

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!!

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!

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.

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!