Tuesday, December 31, 2013

Ice Cream and a Snoogle

Well...it's been a couple of days since I took my fanny pack off and I've taken stock of what the new cocktail means to me.

My neuropathy is definitely gone...for now. That means that I have a ton of options for nutrition that I didn't have for at least a week each time I had previous infusions. How do I get a bunch of calories in a small volume?  Ice Cream!  I can once again put a nice cold spoonful of wonderfully sweet, creamy goodness in my mouth without feeling like it's full of crawling bugs. Yes!  My neuropathy being gone also means that I can touch things that are cold and actually apply pressure with my fingers. This will make getting into work so much easier. I had a heck of a time with our card readers and pin pads before Christmas. 

My abdominal pain isn't gone, but it has evolved. I've had to sleep on a bed wedge that raises my head about 7.5" just to be comfortable in bed for the past two months. The only problem is that I don't sleep on my back well and the wedge keeps you on your back whether you like it or not. So sleep has been elusive. It had gotten so bad that I tried different solutions to sleep and still not wake up in searing pain. One of those was just sleeping in bed like I always have...15 minutes was all I lasted before I was in unbearable pain. The pain comes from my abdomen where all the tumors and atrophied muscles are. They don't like to be stretched and without some sort of support they make it very clear how unhappy they are. My old team at Schreiber Foods surprised me with a get well card and Amazon gift card for Christmas.  With that card I bought a Snoogle. We had gotten one for Tami when she was pregnant and she loved it. It really does provide a bunch of different support positions and is pretty darn comfy.  So there...I'm buying canes and pregnancy nursing/sleeping pillows. The Snoogle was great but I still couldn't use it because of the abdominal pain caused by the chemo drugs. I'm happy to report that I tried it last night and got the best night sleep that I've had in months. Yay sleep!  Another positive change for the new drug. 

I-Run-To-The-Can is a cruel joke. I was expecting some serious movement in my gut with the switch to Irinotecan. As odd as it sounds, for someone whose had a hard time...um...going for weeks on end, I was actually looking forward to this side effect. The first night it hit as expected, so I went off my Miralax (no need to help it out right) and then it disappeared like a shadow in the night. It's been 3 days since my last...confessional...and Father, I don't feel well at all. I'm back on the Miralax and hope to see something today. I'm pretty sure not too many people pray to God with a little tear in their eye and ask for a good BM.

I've heard a lot of people celebrating the demise of 2013 and hoping that 2014 will be better.  No doubt, it hasn't been the best year.  I have a bunch of friends and family who have had some pretty crappy things happen to them this past year.  Maybe I'm the exception here but, until my diagnosis in November, my year went really well.  I got my dream job, a huge raise, a bunch of certifications and got to be closer to my family.  Even after my diagnosis, which admittedly put a damper on the end of the year, I found out that I had made a difference in so many peoples' lives that there was an overwhelming outpouring of prayer and positive thoughts.  I found new friendships, fostered existing relationships and just saw the beauty of humanity in general.  All in all, I think the year turned out pretty good.

When you look back at the year at this time for reflection, look for some of the positive aspects of it instead of the negative.  It will help you to determine what to focus on in the new year.

Thank you to everyone who made this year memorable.


Friday, December 27, 2013

Change in plans...

If this disease has taught me anything (beyond the fact that I'm surrounded by amazing friends and family) it is to expect the unexpected. And then run with it.

Every time I go in for chemo they take blood and run a battery of tests. They also take urine and run a bunch of tests. As you'll note from my last chemo update, we found that my liver enzymes were high. High enough that my treatment was delayed until they got a doctor to sign off on it. This time, every important number that has to do with my liver has gone up again. As my Dr. said, "Everything is going in the wrong direction."  Right now we don't know if this is due to the particular chemo track or if my cancer just isn't responding to treatment and progressing just to spite me. 

Of particular concern, my bilirubin levels have climbed dangerously high and fast. This is a measure of liver function and if left unchecked can lead to permanent liver damage and liver failure.  That's bad news in my case because liver transplants are a big no-no for terminal cancer patients.  So it would be an end-of-the-line kind of thing. 

The other cause for thought is a number called CEA.  This is the cancer marker that is a suggestive, but not diagnostic measurement.  This means that they look at it but it isn't accurate enough across many individuals to be really reliable.  Technically, as the number climbs it indicates that your cancer is progressing.   Mine was 3.8 at diagnosis.  5.8 at my first chemo.  13.8 at my second chemo.  53.8 was my number today.  Again, I want to be clear (as much for myself as for anyone else reading this) that this is not a number that they use to say things are going good or bad, it just makes them pay a little more attention.  There have been many people whose CEA never elevated who never made it and there have been many people with CEA in the 200-400 range who have come through unscathed. 

So the big news of the day is that we've chosen to change chemo treatments.  And we started today.  The change is in just one drug in the cocktail, but it's the biggie.  The Oxaliplatin has been replaced on the mound by Irinotecan.  This has been lovingly nicknamed by the nurses as I-Run-To-The-Can.  Yup, the most common side effect is severe diarrhea.  To this I say...Bring It On!  That's why I have the Swash.  As far as other side effects, there are too many to list and it's hit or miss as to whether any one individual will actually experience them.  So I'll stick to what I've experienced already.  
  • Uncontrollable sweating - I've gone through a full change of clothes already.  Thankfully, it seems to have abated a bit, but there is no way to know if or when it will come back.  
  • Runny nose - Right, like this one should be mentioned at all...but it is a steady and unrelenting trickle.  
  • Confusion - I have had bouts of confusion so bad today that I wasn't aware of what my wife was doing when she was trying to cover me up with blankets because I was freezing.  My response to her action?  "I just don't feel right about it..."  A blanket.  Also, there was a full, freshly opened box of tissue on my side table, but in a different spot than it usually was.  (Note, a side table isn't a huge area where one misses things due to size.)  Since I didn't see my tissue box I opened a new one and put it right next to the existing one.  Didn't realize what I had done for several minutes.  
Now...It's not all dark clouds and thunder claps.  There are some pretty wicked side effects from the Oxaliplatin that I get to say goodby to.  The biggest of which is the neuropathy.  That alone makes me smile ear to ear.  The neuropathy was an absolutely demoralizing and limiting impact on my life.  There were so many tings that I couldn't do while I was experiencing neuropathy that would have helped in my hydration and nutrition regimens.  Now I can do those things and (fingers crossed) make life easier with being able to ingest food and liquid.  
We still have a CT scheduled for Jan 8th and will go over those results on the 10th with my doctor right before my 4th treatment.  That will be the big update day.  We will have actual, real results to share.

And in other news...I got a cane.  It's a nice collapsible model in metallic grey and occasionally helps me up and down the stairs.  I haven't had the need to take it out in public yet, but at this point I have no qualms about doing so.  It keeps me from falling down and I think that's pretty darn cool.  

Swallow your pride today...or tomorrow...or anytime you feel that pride is preventing you from doing something good for yourself.  


Friday, December 20, 2013


gerund or present participle: swashbuckling
engage in daring and romantic adventures with ostentatious bravado or flamboyance.

It finally happened.  I have been too sick to install the Swash 900 and the pain that accompanies my later stages of treatment week finally hit, meaning that it is again painful to...clean up.  So I called in the big guns.  My Dad.  He came in and installed the new seat.

The Swash 900 in all of it's automated beauty
After we aligned everything, hooked it up to a water source and plugged it into a temporary power source (extension cord running out of the toilet room to the sink area) we wanted to test it.  But surprisingly, nobody felt like dropping their pants to be the guinea pig on the first run of something could be a beautiful, but also horrible experience.  So I broke out the plastic wrap.  Having been on too many band trips to count, I'm sort of an expert at wrapping a toilet in plastic wrap without it looking like something is out of place.   

The purpose, of course, for the plastic wrap was to observe the proper function of all of the mechanisms without having to actually sit on the thing.  The upside is that we would be able to see how tings worked and tinker with settings in a safe and controlled manner.  There was one problem with this plan...the seat is pressure sensitive.  It won't work unless it senses that there is someone sitting on it.  Bummer.

So we did what any good tester would do and we "simulated" a person sitting on the seat.  Basically we pressed down really hard with our hands and eventually knees.  This worked as long as the pressure was even.  If we shifted in the slightest way possible, the seat would beep and shut down.  This is a wonderful safety feature now that I think of it.  Myah is mildly interested in how the whole thing works and I would be surprised if she tried to show a friend how everything worked while we were in another room.  This feature ensures that I don't have a mess to clean up when I hear little girls screaming and giggling.  

So how does it work?  It's ingenious.  Once you sit on the seat it snaps out of eco mode and heats up in less than 2 seconds.  It dumps a little water out of the nozzles because that is the water that has gotten cold waiting for the next round and fills them with warm water from the tankless heater in the back of the unit.  The seat remembers what your favorite setting is and always maintains those values until you change them.  In my case, the water is set on the warmest setting, the nozzle is positioned right where it needs to be and the water pressure and spray width are perfect.  Yes, these are all things that you can adjust and customize to your preferences.  

When that faithful time comes, you simply pick up the remote (remember, if I'm paying that much for something you plug in, it's going to have a remote) and you have two choices.  Rear or Front.  Pretty self explanatory. So, once you make your choice, there is some noise from the unit and you can hear the nozzle come out of it's storage location.  Then the fun begins.  The water that comes out isn't the final temperature that you've set but it only takes a second to get there and it is in no way cold at all.  At that point you can change the nozzle position (fore and aft), change the water pressure and temperature (all of which happen instantly) as well as the width of the stream.  You can have it pin point or choose a wide option.  I go with the wide option.  

I haven't had a point where the water stops on it's own yet.  I think it times out at 2 minutes, but I manually stop mine before it goes that long.  Let me be clear here, this thing feels like nothing else and I may appreciate it a bit too much already, but I'm going to try to keep my relationship with the Swash on a strictly "service provider" level.  And for any of you readers who have moderate to severe hemorrhoids, this thing is a Godsend.  It has paid for itself in the 18 hours that it's been installed simply for the relief that it has provided in that area alone.  

Conclusion?  Buy one.  You won't regret it.  ;)

Go do some swashbuckling this weekend.  (and no...it doesn't have to include something that cleans your butt...but...always try to keep your butt clean...I mean that's just obvious isn't it?)


Sunday, December 15, 2013

Two Treatments Complete

Well, today we reached the end of the second full chemo treatment.  Tami took my empty poison bottle off, flushed my port and took the needle out of my chest this afternoon.  (With both of us lamenting the irony of having so many medical professionals in the family and choosing to do all of this ourselves...)

There were a lot of lessons learned this weekend.  It wasn't the best weekend, but we did a lot of things differently that made certain parts of it better.  We also learned that there are just some things that are beyond our control and that we simply have to learn to manage the best that we can.

Lesson #1 - The second day of chemo is the worst.  This is the biggest lesson that we learned...the hard way.  During our first chemo, you might recall that I attributed the intense abdominal pain on the second night to my total screwing-up of my nutrition and hydration.  This time we had timers, the right liquids and decent nutrition, although I'm still struggling with that one.  Unfortunately, none of that helped the afternoon into evening abdominal pain that gave a big middle finger to the pain meds that I'm taking.  I told Tami that I had never experienced such constant and intense pain in my life.  The best way to describe it is to imagine an elephant spending a good 20 minutes stomping on your midsection and turning everything in it to mush but miraculously not breaking any bones.  It's like every organ between your ribcage and groin has been severely damaged and is in intense pain for about 18 hours.  It turns into a pretty dark time, so I'm immensely grateful that my parents had the dog AND the kid last night.  It would've been hard for Myah to see that.

Lesson #2 - Organization is key!  We were so much better this time around than we were two weeks ago.  When I needed something, it was there.  We didn't have to make do and we didn't fall behind (much).   I have a big issue with things that are cold for several days after treatment.  I don't remember if I've referenced it before, but it's called Peripheral Neuropathy.  On a basic level, it's damage to your nerves starting in the hands and feet and eventually moving to your arms and legs.  It manifests as slight tingling to sharp shooting pains depending on the stage that you're in or the items that you touch.  Mine is set off by cold things.  I can't touch, eat or drink anything even remotely cold for several days after my treatments.  Also, going outside when it's cold makes everything freakout.  So we stocked up on bottled water and Gatorade that stays out of the fridge.  There are gloves by the fridge so I don't have to have people always grab things for me and we have heating blankets on both floors now.  :)

Lesson #3 - We need help.  There I said it.  We discussed the items that needed to be accomplished on chemo weekends and have decided to get a house cleaner for those items.  On non-chemo weekends we're good.  On chemo weekends, things just get too challenging.  So, during my infusion day (every other Friday) we are hiring someone to vacuum, clean the bathrooms and kitchen, dust and do the laundry.  This will make the remainder of the weekend, particularly the second day of treatment, so much easier to tackle.  We initially resisted, because we felt lazy.  But really, it is just going to allow us to function so much better when we really need to. 

So, now that we know that second chemo day is just going to be a hard day no matter what, we can set better expectations and be even better prepared.  There were more lessons learned, but these were the big three.  I'm still working on nutrition, and I don't see that getting any easier anytime soon.  My nutritionist had a very honest talk with me on Friday.  She made it very clear that, as my body works to repair itself, it will gladly take protein from my muscles to fix what I'm killing with the chemo.  That means that as I lose weight, it's not the fat that I WANT to lose, it's the muscle that I can't afford to lose.  That gave me some motivation to push through these barriers.  Hopefully I'll have some good news on that front next week.

Make sure to support your team whether they win or lose.  GO PACK GO!!


Saturday, December 14, 2013

Potty Time

Disclaimer...As the title implies, much of this post will be about bodily functions and what happens (or doesn't) in the bathroom.  I realize that I may talk about these things a lot, but it just happens to be one of the largest and most monitored parts of my journey, that it is hard to avoid.  My promise to you is that I will consistently post a disclaimer so that you can choose to continue or catch the next bus (although, if my counters are correct, readership has been falling lately...probably because of posts like this).  However, if you do hold on till the end, there is a slightly amusing anecdote about a very real conversation I had with God, while on the toilet, in a very convincing Irish brogue.  

Since getting sick, I've had to pay attention to everything my body does or says.  It's an amazing dichotomy really.  I've gotten to know my body more in the past month than I ever have before.  Yet I have this thing growing inside of me and I have no clue what it's doing to me on a second by second basis.  It's a huge black hole in the middle of my gut that I won't have any insight into until January 10th.  What I do know about it, is that it breaks a lot of stuff in my body.  And the stuff that I take to fix it breaks even more stuff.  Most of it in the "bathroom" arena.  So let's just get right into it shall we?  (Remember, I lost my pride and shame when they said I had cancer.)

Urination - All of the chemo books and guides suggest that you start peeing sitting down.  Why?  No matter how much you've got to pee, the plumbing just doesn't work right anymore.  Today, I decided to follow all of the advice.  I'm too tired to clean pee off the floor and my shoe again.  It's happened too many times now. 

Flatulation - I've always been a gassy boy.  Until now.  Now, I would give ANYTHING to pass some gas.  But I just can't.  It is such a painful existence.  So when I do let go of one, I thank the heavens.  I never know when this is going to happen (that means you need to be prepared for me not to excuse myself from the room when you're over for a visit).  It may happen when I'm laying on my side, or it may happen whilst on the toilet.  But when it does actually happen, my Savior gets a shout out.  That's right. I talk to God when I fart. I talk to him other times too. In fact he and I have had a running dialog for the last several weeks. I'm told that's to be expected. I'm told a lot of things. 

Solid Waste - this is an even more elusive beast than it's noisy cousin. I never can tell if there is a pile up on the freeway that's blocking all of the other traffic (common when you have a big tumor in your rectum) or if I just haven't had enough solids today. I'm back to Miralax to see if it can bring back the magic but it's too soon to tell. I find myself reviewing the side effect sheets for my drugs and lamenting the fact that I didn't get diarrhea. Stupid, I know. I would be even more dehydrated than I am right now and I would be just as miserable. 

Vomitus - Thankfully this hasn't afflicted me yet, but I will rue the day that it does. I decided to stop my Zofran today. 2 days early. It makes me really super dizzy. I've been pretty good all day until this evening. With all of my second day chemo pain, my stomach is a bit empty and a bit queasy. Add to that, the fact that I totally lost my shit tonight and went on for who knows how long about all the emotional stuff that is churning in my head. That lead to voluminous amounts of mucus, most of which lodged firmly in the very back of my throat. Right at the gag button. So now, I have to clear my throat and feel like I'm going to spew. Here's the big problem with me and spew...I'm a Tuba player. My diaphragm may have lost some of it's umph in the last two months or so, but it still makes me one of the most dangerous projectile vomiters this side of the Mississippi. I have two little orange buckets strategically placed in the house. It's cute. I'm guessing it will be a bit ineffective when the time comes, but quaint nonetheless. I'm hoping that time doesn't come. Because it won't be pretty and it will be plenty painfull.  A hiccup buckles my knees and when I do laugh or cry, I have to stop before it becomes a snowball where the pain keeps it rolling. 

An Irishman talks to God...

This was really a surprise. I've always felt myself to be a spiritual man, a worldy man and a just-in-general pretty good guy. I accepted Jesus into my heart many years ago and our bond has been tested many times since then. Mostly by the Tea Party. (Yup, I just went political...but don't worry that's where it stops for now.)  I have an issue with religion. I don't have an issue with God though. I think we're pretty good. I can say that because in the midst of pain this evening I talked with God...on the toilet...in a thick Irish brogue. It was a 20 minute conversation where I asked him to give me strength and courage and long suffering. I asked that he watch over my girls with or without me. And the entire time I'm an Irishman. I didn't intentionally do it and it lasted the entire conversation. And I felt really good afterward. It is honestly something that I can say I have never done before. But that I hope happens again. Obviously, doing it on purpose would ruin it. So...hopefully I'll be surprised again. 

And there was another first as well. I asked for time. I've made a conscious effort not to do this with God. Anytime that I thought about it I felt like I was bargaining. When I heard it come out, even as a very reasonable request in a very reasonable accent, it still felt like the desperate act of a desperate man. I won't be doing that again. Talking with God shouldn't make you feel uncomfortable or desperate. It should enrich you, calm you and fill you with peace. 

Have a surprise conversation with your God tonight. You won't regret it. ;)


Friday, December 13, 2013

2 in the bag

I love infusion days.  And that is seriously not a joke.  I've spent the last two weeks dehydrated and undernourished.  In those 2 weeks I've lost almost 9 pounds.  I've had good days and bad, ridden this rollercoaster up and down and it's pretty much kicked my ass at will.  But on infusion days it all gets better.  Sure, I have weird side effects from my chemo drugs, but everything is mixed with saline and dextrose water.  Before my infusion days I never have pee that looks normal.  It ranges from really dark to oh-my-god-should-I-call-the-doctor dark.  On my infusion days, I pee like 5 times while I'm there (that's like 3 days of regular pee) and it progressively looks like it's supposed to.  I also feel like a million bucks because I'm hydrated. 

But I have a whole new approach for this next two weeks.  Timers for hydration (every 15 minutes) and nutrition (every 2 hours).  New Boost Very High Calorie drinks for breakfast.  (530 calories in just 8 oz of liquid drink!)  Chicken thighs already grilled up and ready for eating, half barbeque and half roasted red pepper.  Miralax morning and night.  A better plan for sleep.  It means more meds, but I need to rest.  My body requires rest to heal and have a fighting chance in this long and protracted fight. 

Today's treatment was good.  It was a long day, full of delays.  I got to the center at 0715 this morning to check-in.  My genetics labs were late but I made that time up with my regular labs.  I've gotta say that I really like having a port.  It is so much easier than getting stuck each time.  The hard part about my labs this morning was giving a urine sample.  There was a lot of sipping water and walking around.  Once I was able to give my sample, there was just enough time to get down to my Dr's office for my appointment.  My Dr was out of town so I saw his PA.  After a 30 minute delay there, I headed up to my infusion appointment and was kept waiting another 45 minutes because some of my liver numbers were off which required an extra sign off from the PA.  All in all, I showed up at 0715 and was finally released at 1430. 

But enough whining...Here is what we learned:

White Count - down a bit but well within normal levels
Liver Bilirubin - Looks good!
Liver Enzymes - All elevated -- This was concerning to everyone, but isn't outside of normal with my particular chemo treatment.  The "O" drug is a heavy metal and is hard on the liver.  So we'll keep an eye on it.
CEA - Shot way up between last chemo and today.  I'll have to followup on that.   We didn't have the numbers before we left so I didn't ask while I was there.
Weight - Last visit I was 233 and today I was 224.  Like I said, it's all about nutrition and hydration for the next two weeks.  I would LOVE  see a weight GAIN, but will be more than happy with maintaining my current number or even just losing a couple of pounds this round.

I have a CT scheduled for the first week in Jan.  I will get those results on Jan 10th.  That will be our first empirical look into whether this is working or not.  Hopefully we have good news for the new year.  :)

Make a goal of peeing 4-7 times a day.  It means that you're properly hydrated.  Really, you'll feel so much better.


Wednesday, December 11, 2013

Stop letting myself be sick

I had a horrible night last night.  I've been having these ultra realistic "waking dream" events in bed that completely mess with my head.  Last night was particularly bad.  For some reason I was stuck in bed...in Texas.  And everyone wanted to see me.  There was a BBQ downstairs and people (friends, family and strangers) kept coming upstairs for a visit.  The problem was that I was in so much pain and unable to move that it was like my own personal hell.  No one listened, no one helped.  Everyone just said that they were so sorry for me.  This translated into an actual and very intense pain in my back.  I don't know if it was tensed up for the hour or so that I was "asleep" before Tami got into bed, but it was excruciating.  I don't remember the events really clearly, but I remember being in tears and saying that I was just so tired of hurting.  Tami rubbed my back for about 10 or 15 minutes and talked me down (again).  By the time that she was done I felt exponentially better and my mind wasn't trying to kill me.  Then I slept soundly for 3 straight hours.  Just another reason she is my hero.

Each day can be a struggle for me.  Sleep doesn't come easy, my body hurts (despite a constant stream of prescribed narcotics) and I'm generally exhausted all the time.  So how do we overcome these challenges?  Stop letting myself be sick.  Easier said than done right?  But I've found that doing just that puts me in a better mood and makes me feel better.  After last night I didn't feel all that great this morning.  It took me an hour to get out of bed and I stayed in the shower until the water ran cool.  I had to take a nap during a 15 minute break in my training class (thankfully it's virtual, so I'm in my sweat pants and the nap was on my couch).  But during the lunch break I decided that I was tired of being sick.  So I went outside with the dog.  She watched me do squat thrusts across my patio...twice.  Then I did some calf raises.  I was out of breath but I felt like I could breathe more effectively.  My legs were shaky and weak, but I knew it was because I was pushing them, not because they were slowly dying on me.  And it all made me feel so much better. 

Now, an hour later, I've eaten an entire Marie Calendar's Turkey Pot Pie.  I also still feel better.  So much so that I think I'll ride my exercise bike during the next break.  And, if I have energy, maybe I'll spend some time with the bands tonight in front of the TV instead of having my legs kicked up on the couch with an iPad on my lap.  And if I do all of this...maybe, just maybe I'll sleep a little bit better tonight.

Now, I know...I know.  I can't do this everyday.  My new reality starts and restarts every hour.  I may not be able to push myself tomorrow, or even tonight.  But I'm tired of feeling sick and from now on, I intend to try to shift that balance in my favor as much as I can.

Push yourself today.  It doesn't have to be physically.  Maybe you haven't done something because fear is getting in your way, or you've been putting something off because there isn't enough time.  Stop making excuses and test your limits.  And when you find them...push through them.


Sunday, December 8, 2013

Heating Blankets and Bidet Hunting

When you get sick, it's amazing to see the types of items that you purchase shift from one realm to the next.  Two months ago my Christmas list included things like a python programming book, a Rasperry Pi and some bike stuff.  Those have changed to a heating blanket (received yesterday as an early present) and a bidet seat (going to be ordering after the research period wraps up).  Ah how times change.  A budding young security professional with thoughts on learning a new programming language and tinkering...now a withering old man who is focused on comfort.

Why a heating blanket and bidet?  When your body starts breaking down, certain things don't work as well as they used to.  I used to be a living, breathing, walking heater.  Any time Tami or Myah was cold, they would cuddle up to me.  That usually resulted in Tami falling asleep...almost instantly.  Unfortunately, I've lost so much muscle mass and the meds that I'm on tweak my blood pressure just enough to make it really hard for my body to regulate it's own temperature.   This is an issue in the middle of the night in the winter.  Our thermostats dial down when we sleep (as they should) so it's 65 in the house around 2am.  This is a popular time for my body to wake up and want to cough, hack, spit and pee.  All of which is fine...until I crawl back in bed and uncontrollably shiver for the next 20 minutes.  That stopped last night.  Yesterday, Tami and Myah brought me home a heating blanket.  Now when I have to get up, I set the blanket to be warm when I get back.  Then it's instant sleep.  I slept so well last night that it HAS to be the blanket.  Tami get's a huge win out of this as well.  She used to use me as her night time heat source, a role that I can no longer fulfill.  So our new dual zone blanket lets her get her side of the bed nice and toasty.  She also slept better last night than she has in a while.  Win Win.  :)

(Disclaimer...there will a brief discussion of bodily functions in this section.  If this makes you uncomfortable or queasy, skip down to the part with the picture.)

The bidet is a different story entirely.  In the last week, Sofia has reared her ugly head again and I have developed another pain, this one further to the right side of my liver.  It's so intense that sleeping on anything but my back is very painful, even with meds.  So are other activities like...um...clean up after some action in the bathroom.  I've tried multiple positions, different attack angles and both hands (obviously not at the same time).  Everything I try ranges from extremely uncomfortable to grit-your-teeth painful.  It's just not worth going through that multiple times a day when there is an obvious (although European) way to fix it.  And really, the benefits don't end there.  There will be times when I may have (as a result of illness or the side effect of a drug) uncontrollable diarrhea.  When this happens, people have been known to just soak in baths because there is so much irritation caused by toilet paper.   This solution would address that as well.  It also would be nice to have something that soothes hemorrhoids.  Yes I have them...although that was totally pre-cancer. 

Now, installing an actual bidet in my bathroom would be physically impossible.  So my only option is a bidet seat.  They come in a variety of shapes and sizes with features that range from spartan to ridiculous.  I could go for the $60 seat add-ons that simply take the cold water from the feed line and hit your under under stuff with it.  But that seems a bit barbaric to me.  If I'm going to go to the trouble of getting and installing a bidet seat, then I'm going to want to have some civility in the process.  That means that my requirements include heated water and an adjustable nozzle.  I don't want to be shifting my body around to get things done. 

Anyone who knows how I operate, knows that I over research things.  I've looked at so many different bidet seats in the passed 24 hours that during my spelling review with Myah last night, each sentence for the given word included a bidet seat.  It was pretty challenging, but absolutely hilarious.  So, I think I'm going with the Brondell Swash 900.  Not only does it have heated water and an adjustable nozzle, but it also has a heated seat as a bonus.  Sweet!  Sure the Swash 300 has almost everything that the 900 has and is $150 less expensive...but the adjustable nozzle position and optional "wide angle" spray pattern sealed the deal for me.  Hey...I like my gadgets, and if I have to buy a bidet seat, I want to geek out a little bit.  (Yes, it has a remote.)

So three whole paragraphs about a bidet seat is probably enough most of you.  ;)  Well, I have something ELSE to talk about too!  I'm tired of being a little weakling who just sits and watches his body disappear.  I started purposefully building muscle today.  Resistance bands have never provided enough of a workout for me...until now.  We have a couple sets for Tami and I picked one up today.  Now, you'll notice that I'm using the red/black braided bands (highest resistance) so I don't feel like such an invalid.  I focused mainly on upper body this morning. 

20 bicep curls on each side
15 crossover pulls on each side
15 standing rows

I also sat on the couch and did 15 leg extensions while holding the bands and pushing out with my feet. 

I'm also going to go for a drive this afternoon to see if I can drive my self to work tomorrow.  I'm confident that I can get there.  I just have to leave early enough to get home safely.  So I'll be splitting my days in half.  Half at work and and half at home.

Random observation...right now the mountains are so stunning.  The tops are covered completely in white puffy clouds.  Just the tops though.  I love our view.  :)

Do something good for your body today.


Wednesday, December 4, 2013

Happy Birthday To Me

I've had a lot of success in the last two days. 

Yesterday -- 
  • It was my birthday, so I officially made it to 36
  • I went to work for almost an entire day!  While there I:
    • Unpacked a server
    • Attended a meeting
    • Opened a couple tickets to improve a workspace that we have
    • Made some headway on a project that was waiting for me
  • I ate OVER my (self) allotted 2055 calories for the day (sure it was only by 27 calories, but OVER!!! W00T W00T)
  • In a single sitting I ate an entire ItsaBurger.  YUM!
Today --
  • I took the day off to "observe" my birthday (long story and I'm too tired)
  • Helped Tami with something important (not an invalid yet...not by a long shot)
  • Put together a stand for side tables (repeat the invalid comment here...)
  • Went to a Genetics appointment
  • Celebrated my birthday with my wonderful family and my amazing parents who brought roast beef and Italian asparagus
  • Capped the night off with a piece of red velvet cake
I'd say that I would be pretty warranted f or a day off tomorrow, but I'm heading back to work.  Why you ask?  A lot of people do ask that it seems.  Because going to work and feeling some tangible accomplishment gets me through the day.  Walking around, standing and squatting help rebuild my atrophied legs and rear-end* and force me to breathe and expand my lungs to maintain what precious capacity I have left.  

It also gives me a welcome distraction from the ever present reality that is battling it out in my abdomen.  When I'm at home "resting", I have way too much time on my hands and far too many reminders that I'm going through some serious shit right now.  The unknown is plentiful, so being able to take part in an activity that gives you some solid ground to stand on is remarkably rejuvenating. 

It's good for Tami too.  Let's face it...I'm not going through this alone.  My wife has borne the brunt of the late night feedings and repositionings, the almost constant coughing and moaning that plague me when I'm prostrate for too long.  This lets her live her life...without me in the background or in the passenger's seat.  That's my hope anyway.  To give each of us an oasis in this big, arid desert full of tumors and poison and bad news.  We need some time to heal each day and I intend to keep this up as long as humanly possible. 

I didn't meet my calorie goal today, and I don't care.  Close does count in this game.  It counts enough for me anyway.  As long as I feel good and I'm still on my feet, I'm going to strive for my goals, but I'm through being disappointed when I miss them by a sliver. 

I was going to post about my genetics appointment...but I've decided against it.  There are some really interesting things there, but very little helpful information and not a lot of hope for anything more useful on the way.  So, no point unless you're a stats professor.

I got what I asked for for my birthday and I'm going to use it first thing in the morning.  A nose and ear hair trimmer.  Yup.  There are some truly epic things growing out of those places and I've decided that you're never too young to tidy them up.  I forgot to order the other thing that I wanted for my birthday.  A chemo shirt.  Yes they exist and yes they look like awesome sauce!  So I intend to do that before I nod off for the night. 

Cuddle with someone/something special tonight. 


* In reference to my atrophied rear-end, this is something I'm really bummed (giggle...bummed...he he), but super motivated about.  I've always been very proud of my butt.  Firm, well-shapen and highly grab-able.  Indeed, it has been the object of desire for many and a source of envy for many more.  And it's almost gone. 

I noticed last week that sitting on a hard surface was becoming increasingly uncomfortable.  It felt like my sits bones were coming right through my skin.  I didn't make too much of it at first but then I caught a sideways glance of myself in a full length mirror just before getting in the shower this morning.  I was shocked, horrified and confused.  My beautiful bum was flat as a board.  (Hanging head and sobbing slightly)  But what could I expect after nearly a month of incredibly limited movement?  It's like I'm one of those guys they pay to spend a summer in bed to study the effects of space flight without actually sending someone to space.  But I'm not getting paid for this.  *sad face*

I say that it's a super source of motivation because I refuse to let this one go.  I will get it back, starting tomorrow.  Each day that I feel well enough I am going to walk stairs and spend time on my recumbent bike (in a trainer in my office).  Those are sure to get my blood pumping and my muscles building.  Yes, I will overdo it and Tami will help me recalibrate and we'll do it again.  Remember, I have a new set of limits every time I wake up.  Sometimes they're good, sometimes they suck.  I'll work with it though.  And I will get my butt back.

Sunday, December 1, 2013

Please God...Not the Massage Chair!

My cousin has named my cancer Sophia.  She's a real pain in my ass.  To be more honest...at the moment she's a real pain in the abdomen.  Butt I like the pun.  (giggle)

Sophia has taken so much from me.  My ability to eat right, breath right, drink right, sleep, think clearly...well, I could go on butt that wouldn't add value at this point.  She has also begun to take away my massage chair.  I think that this hits me more in the emotional department than anything else (at this very moment at least). 

For those of you that know us, you know that we have an additional family member that stays in the living room and helps us get trough all of the long days.  We just call it "The Chair", but my mother has affectionately named it "Darth".  (Due to the black leather and compressor sounds as it kneads your calves and butt.)  When the pump went out earlier this year we freaked out.  First world problem I know.  Butt seriously...we were pretty upset.  So we found a way to fix it and all was right with the world again. 

When I was diagnosed a couple of weeks ago it had already gotten to the point to where I couldn't sit through the automated routines.  Too much rocking side to side.  Since then I've been able to do just straight up back massages.  When my body contorts for much of the night, the chair is my only non-induced salvation.  This evening, as I sat down for a much needed 20 minute rub down, Sophia reared her ugly head and gave me the finger.  I had to reduce my full back rubdown to just shoulders. 

When you have issues with your liver they poke you a lot.  They poke your front, they poke your sides and they poke your back.  If you've been following along, you know that my pain comes from the protective coating surrounding my liver.  As the tumors grow out of the surface of the liver, they protrude into the coating (which is under stress anyway, due to the increasing size of my liver).  Up to this point, I hadn't had any issues with my back.  All the pain has been limited to my front.  Sitting down in my bastion of relaxation this evening, I felt a sharp pain each time the rollers passed along the right side of my mid-back.  So much so that I had to stop and readjust to have it limited to my shoulders only. 

And piece by piece, Sophia takes.  She's a greedy little unwanted house guest.  Butt I don't intend to let her take everything.  She can't take the love that I feel for my family and friends.  She can't take the prayers and thoughts that are streaming my way on a constant basis.  She may eventually take my physical freedom, butt she'll never take my spiritual and emotional freedom.  Those I hold too dear. 

So...fine...I'm slowly losing my massage chair for now.  It's a small price to pay.  I'll be back to full massages someday.  I'll also be back to bike rides and pool parties.  And wings.  :)

See how many times you can substitute butt for but in a written work without someone commenting this week.  ;)