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.

Jake

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.  

Jake

Friday, December 20, 2013

Swashbuckling

swash·buck·le
ˈswôSHˌbəkəl,ˈswäSH-/
verb
gerund or present participle: swashbuckling
1.
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?)


Jake

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!!

Jake

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. ;)

Jake


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.

Jake

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.

Jake


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.

Jake

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. 

Jake



* 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.  ;)

Jake

Saturday, November 30, 2013

Perspective

This has been a hard one for me lately.  Time and reason head right out the door at 2 in the morning when the rest of the house is asleep and you're still in pain and trying to find some way to catch the sandman with or without the benefit of pharmaceuticals.  Your mind starts heading to the dark side and arbitrarily measuring your current state of success or failure.  These are all false measure of course, but really...at that moment there is nothing as real as the little voice in your head.  I've had a couple of really challenging days.  Side effects of chemo, pain from multiple surgeries, well publicized issues with eating and hydrating and a nagging cough that has me convinced that it will tun into pneumonia at any minute all conspire against rational thought and a healthy perspective. 

So, why is it so hard?  Because I feel like shit.  My body hurts, nothing works right and I pretty much totally under-prepared for the lack of energy and strength that I am currently faced with.  And I'm an eternal optimist with sometimes, unrealistic expectations.  These were the expectations that I laid out for this weekend:
  • Chemo wouldn't kick my ass too bad and I would be able to function fairly normally
  • Chemo would start making it easier to eat by shrinking the tumors in my liver
  • My liver biopsy site would heal quickly and generally not bother me
  • My port site(s) would heal quickly and generally not bother me
  • Working with a strict schedule to ration food and liquids throughout the day would result in an effective means to meet my nutritional goals by the end of this week
Here is the comparative (and much more accurate) perspective for each point:
  • There is no possible way to predict how a first time chemo treatment (or even subsequent ones for that matter) will impact you.  Counting on a certain outcome (vs just hoping for one) is a foolhardy exercise.  It's also demoralizing when you expect the best and get knocked on your rear instead.   
  • This is the ultimate goal...it should NOT be considered an immediate one.  This one slipped by though.  Even in conversations with my family and doctors I set the bar further out, looking at 3 o 4 treatments before I could really feel any change.  But my internal goal setter blatantly ignored all of that and prepared for immediate improvement.  Talk about a disconnect right?  It's like I've got congress in my head, saying one thing and then doing something absolutely stupid and contrary to reality. 
  • I'm going to combine the next two bullets (for those interested in symmetry...this is the reason the number of bullets won't match up).  It has been less than a week since I had several "plugs" removed from my liver and it's tumors.  That same time frame applies to the fact that I have small alien structure in my chest, connected to a catheter that has been stitched into my jugular.  These need time to heal, especially when you consider that my chemo treatments actively prevent things from healing at normal rates.  So it hurts when I cough and I fear that I'm going to bust my jugular wide open when I'm trying to hack something up from the depths of my lungs.  I need to make peace with the fact that this will be the case for at least another week or two.
  • When you're dealing with something so foreign and alternate than any other reality that you've ever dreamed up, it's hard to predict things.  Schedules are great, but they fall apart quickly when you can't lift your head to take a drink, or when putting something in your stomach is the last thing that you want to do on earth.  I still feel that this goal shouldn't change much though.  It is going to be key that I take in the proper amount of liquids, calories and protein to help my body heal.  This is really important.  The time frame will shift, but the goal will remain the same.  
It's amazing where rational thought can guide you.   So...on to the actual status update for this weekend:

Thanksgiving - The official day-after day for my main infusions and my first 24 hours with my fanny pack of power.  This day was hard.  Really hard.  I was so tired that I didn't hydrate enough and I missed several mini-meals prior to the turkey and gravy.  My parents brought over the food and Tami and Myah went to her sister's house for dinner.  So it was my parents and I, just like the good ol' days.  Except that I crashed around 3.  I ate too much dinner after I realized that I hadn't eaten anything earlier in the day.  That night was a disaster and textbook for what not to do.  I spent the rest of the evening dry heaving (because of chest congestion, not nausea) and trying to find some semblance of peace so that I could sleep.

Black Friday - My last day with the poison being pumped into my chest.  Tami was amazing.  She disconnected everything, flushed my port, removed the needle from my chest and held me up as I got so dizzy I almost fell down.  It was a celebratory day because I could finally sleep in bed...only I couldn't really.  I was still reeling from the miscalculations of the previous day (it's a one step forward, 5 steps backward thing when you don't do it right) and I refused to take a pain med before bed time.  I was just looking forward to my bed.  It was a 3 hour exercise in patience and determination to actually get to sleep after that...with the help of a pain med.  Ya ya, I know.  That's what they're there for.  I'm starting to realize that more and more.

Today - A much better day overall, but still challenging.  In the lows of the past two days I forgot to take my Miralax.  Combine that with my increased usage of pain meds and you have one stopped up Jake.  And that just adds to my abdominal pain, which now "refers" up to my shoulder thanks to my biopsy site.  So I haven't had enough to eat today, but I'm drinking more.  I would much rather be hydrated and under calories than the other way around.  I've had too much of that this week.  On the positive side though, I spent more time outside soaking up the sun today than I have in the past couple of weeks.  It was a beautiful day, and I actually made it out to the mailbox with Tami.  Win.  :)

We'll see what tomorrow brings.  I've been getting really dizzy lately and we are trying to determine the exact cause (literally everything I'm on lists dizziness as a side effect).  I'm hoping that it's the Zofran which I've taken myself off of (no issues with nausea) this morning.  The big consequence of this is that I can't drive if I randomly experience vertigo.  So I can't get to work.  I've worked out several contingencies with options to work from home as much as I can, so it's nothing that I can't overcome.  I just want to know what keeps turning my world upside down. 

As I try to get back to some kind of routine, I don't know how much I will be posting.  I'm going to shoot for every 2 to 3 days depending on how I feel and how much I have to say. 

Be nice to someone you don't know.  It really does feel good.  :)

Jake

Thursday, November 28, 2013

Wednesday, November 27, 2013

It smells like gunpowder

Of all the different smells, tastes and other sensory experiences that I've read about or have been briefed on by nurses, techs, friends and family, this one seems to have made the biggest impact on me so far. And it's not even directly related to my treatments.  The paper towels in the bathrooms here (UNMCC Infusion Suite) when wet, smell exactly like spent fireworks. So every time I wash my hands (which is about every 20 minutes with all of the fluids they've pumped into me) it's like the 4th of July.

It is just shy of 2 weeks since I received my diagnosis and I've experienced a host of new sensations already.  When you get a CT with contrast (an iodine like substance) you get a very pronounced warming sensation behind your ears and in your...eh hem...southern region. I was told that it resembles the feeling of wetting one's self. I got the warmth but not the thought that I needed a diaper. Many of the things that are given to you are supposed to leave a metallic taste in your mouth. I haven't had a lot of this yet, but apparently some people have to switch to plastic ware. I was told, and have indeed noticed, that when you get saline via your port from a syringe you can "taste" it vs just out of a bag.  Strange but true.  Also, something that no one prepared me for...cold drinks now feel different.  I was told that I could have a sensitivity to cold things (liquids, air etc.) but now drinking anything cold makes me feel like I'm drinking carpet water.  (water filled with carpet fibers...)  So much for that being part of the process.  

Speaking of the process, I got my marching orders today. I started on a cocktail of Oxaliplatin, Fluorouracil and Avastin.  I get the O and A over the course of a 4 to 5 hour infusion every other week.  The F goes home with me on treatment day in a little fanny pack connected to my port. (That's the fanny pack of power filled with take-home biohazard in the picture.)  This part releases over the next 48 hours.  At that point we have two options.  1) I head back to the center to have my access taken out. 2) We train Tami to take my port access out and avoid another trip into the center.  We chose option 2.  Yes.  My wife said that she wanted to learn how to do it.  The woman who wouldn't learn how to cut my hair early in our marriage now knows how to flush out my port and remove the needle from my chest.  She's my hero more and more each day.  :)  Then it's another 10 to 12 days of healing (and kicking the heck out of the cancer in my body) before I come back and repeat the whole process again.  Consequently, when I have the fanny pack of power strapped on, I have to sleep on the couch so I don't rip the poison out of my chest too early.  Oh yeah...and the fanny pack of power may get a better name...maybe.

The infusion was/is a surreal experience. It somehow makes the fact that you have cancer more of a reality. And it takes a long time. Tami and I talked about the chemo-buddy thing.  There has been a lot of talk about switching off who accompanies me to my treatments.  For the time being, Tami and I really enjoyed our time together.  Tami would like to remain the person who takes me there.  5-6 hours is a long time, but it gives us time to make up for those moments we may have glossed over in the past.  It also gives her time to catch up communicating to all of our wonderful friends and having her own down time without feeling like she's avoiding some other duty (since the wonderful people at UNM take care of my every need while we're there). 

I was told that my chemo day will be pretty good (as it has been) and I can expect the day or two later to be fairly miserable if it's gonna hit me.  So we'll see how tomorrow and Friday go.  I really think that if I stay hydrated, a bunch of my crappy symptoms will be lessened.  So the goal now is to sip throughout the day.  How do I measure my hydration level?  Start counting my trips to the bathroom.  Yeah.  Not glamorous and TMI for much of you I'm sure, but for me it's necessary.  Yesterday I peed twice the entire day.  Today I went 5 times at the center alone.  Easy to compare.  But worry not...I won't talk about those stats a lot in this forum.  ;)

Keep your loved ones hydrated. 

(and if you're reading this tomorrow...on Thanksgiving...GO PACK GO!!!)

Jake

Tuesday, November 26, 2013

I Have The Power!!!

I was notified that the model of port that I had placed this morning is the "Power Port".  I was immediately reminded of my childhood when I would hold up a stick and yell out to the heavens, "I Have The Power!"  My friend Erin told me today.  It's like I'm weaponizing my body.  I like that imagery. 

I don't feel wonderful right now and I'm sure that I'll feel even worse in the coming days, but it doesn't matter.  Now I'm doing something.  Something tangible and real.  I'm not just sitting here managing pain and waiting for this thing to kill me.  And that makes all of this worth while. 

And just so no one gets queasy, that red line on my side is sharpie.  That is my liver biopsy site.  Why a liver biopsy you ask?  (Don't worry I asked too.)  We have to determine if the cancer in my liver is indeed the same cancer as the alien in my colon.  There is an incredibly rare chance that I would be fighting two different types of cancer.  And while that is almost out of the question, it is something that we have to consider in order to treat it effectively.

Tomorrow we get up bright and early and head to the UNM Cancer Center for the first round of chemo.  Biweekly rounds of poison with regimen names like FOLFOX and FOLFIRI.  Nasty little cocktails that are designed to kill off anything standing that resembles colon cancer.  Sure I'll be killing off little bits of myself along with it, but that's the reality of this situation.  And if it keeps me alive longer, I'm in for just about anything.

Since I'm expecting another post in the next two days, I'll keep this one short.  I just wanted to send a quick status update and give a picture to those guys like my friend Ryan who just have to see the surgery stuff. 

Find your source of strength today.

Jake

Sunday, November 24, 2013

The best is yet to come

Or otherwise known as, "Is that the best you've got?!"

Today was a hard day. I was going to write about eating yesterday and my struggles to get enough low-volume, high-calorie/protein food in me to have enough strength for treatments. But I ran out of time and energy.  Guess I'd better get used to that eh?  I had two great days on Friday and Saturday (aside from the itching...) and it feels like everything has been erased today. 

My nutritionist wants me to have 2700 - 3000 cal a day with 100 grams of protein. This is an impossible feat. So impossible that I've altered the numbers myself down to a modest 1700 - 2000 cal a day with as much protein as I can get.  But even with those numbers I feel like Sisyphus, starting each day with a task in which I'm doomed to fail. The more I eat the more I hurt. That's the distilled and simple truth. I've managed to get 1200 - 1300 cal a day in max, with 75 - 96 grams of protein, but it comes at a price.  My midsection is so constricted with this diet, that it makes it hard to breathe. I constantly feel short of breath and there is literally no way to fix it other than wait. And not eat. But I'm supposed to be eating.  I can't eat more than 200 - 300 calories at a time and I have to wait much longer than the prescribed 2 hours to eat again without pain. 

On the plus side, I've figured out how to make some seriously calorie dense smoothies. They taste pretty good too!  One of the suggestions that I've found to be the most helpful is adding a serving of powdered milk to my smoothies (which already have a cup of milk in them), that way you double the calories and protein in your drink while adding a negligible amount of volume.  Genius.  The other thing I need to try is adding an avocado. 

I also found out that I can't have anything with Stevia in it. I had a wonderful smoothie on Friday morning packed with a brand new protein powder. I spent the next two days with an unbearable itch and rash at various points on my body. Unnecessary stress at this point. 

I started feeling slight pains on the 24th of Oct. Since then I've lost 20 pounds. About half being a result of the cancer and half from not being able to eat right. I start chemo on Wed and it couldn't come sooner. I don't like taking pain meds, but I'm forced to at this point just to lay down at night. (Lay down...lie down?  Ah well...my grammar is the least of my concerns right now.)

I'm rambling now...let's see if I can focus this a bit. 

I got scared today. Not the existential scared of the unknown future that I've already experienced and reconciled. The right now kind of scared that you feel when you walk down a long dark hallway. The kind of scared where you don't know if you'll make it to your chemo treatment in a few days. What happens if my breathing gets bad enough while I'm sleeping that it turns into an emergency situation?  What happens if my port placement and liver biopsy take a turn for the worst?  These are all completely irrational questions driven by fear and uncertainty. But they have flashed through my consciousness today.  Easy to do when you're stuck on the couch and feel like you can't breathe. 

I don't want to leave in 2, 3 or 5 years.  But I've made peace with that reality if it comes to it.  I'm not ready to go yet though.  Not right now.  But what real say in the matter do we have?  I was reminded of this as I was reveling in the exploits of my friends who rode the Tour of Tucson on Saturday.  That evening, a man named John Henderson was hit by a car while riding his bike in the race, and passed away.  That is instant and final.  There is no saying goodbye, no spending purposeful and focused quality time with your loved ones because you know what is on the horizon.  No making up for lost time.  My prayers go out to his partner and family.  

So...the best very definitely IS yet to come, if you take it.  We spend our lives missing opportunities and we shouldn't.  I certainly don't intend to anymore.  Yesterday was a good day and I spent a lot of time with Myah.  We built a Lego airplane and Myah asked where is was going to land.  So we built a landing strip too.  We've spent the past 24 hours with her being the plane (fast mover 425) and me being the tower, clearing her to land and takeoff (on runway 227 south of course).  It really has been wonderful and something that I may not have spent as much time on in the past. 


Go spend some time not missing opportunities. 

Jake

Friday, November 22, 2013

Your Cancer's Better Than Mine

It's ridiculous to say, or even think.  But I will freely admit to falling into this trap more than once already.  Today marks the first full week that I have been diagnosed with Colorectal Liver Metastases (CLM).  It's the second deadliest form of cancer I'm told.  (remember, Tami has pretty much forbidden me from looking up any more numbers and pictures and stuff)  That said, my chances aren't very good.  I know this.  I'm choosing to stay positive and beat this thing.  If my Great Aunt can still be kicking after years of chemo at her advanced age (91...and she was diagnosed with lymphoma almost 15 years ago) and her incredibly frail body, I should be looking pretty good.

The problem is the little dark place in my head and the sometimes searing pain in my gut.  When those things combine, along with my problems eating, and taking in too much sugar and on and on and on...we'll lets just say that my slightly less positive side comes out.  And I've found that side to be spiteful, envious and not at all in line with how I should be viewing the world right now.  I look at other people who are going through my same journey.  I read their blogs, talk to their families or even text them.  And on a rare occasion I look at their situation and pity myself.  Yes.  I see them as luckier than me.  Maybe they caught the cancer early and they are only treating a single tumor, maybe it's one of those cancers that has a really high survivability rate, maybe maybe maybe...

It doesn't matter that they are just as scared as I am about facing such an unknown.  It doesn't matter that just uttering the word cancer makes people's blood pressure elevate or causes them to break out in hives.  It doesn't matter that they may not have half of the support system that I do, with amazing friends and family, great doctors at a nationally recognized cancer center and a wonderful job with fantastic health insurance.  Because in that moment, their cancer is better than mine. 

This is a dangerous slope.  If you buy into this, you start seeing it everywhere as you travel outside of the cancer realm.  You draw stupid parallels in TV shows or commercials.  You start looking at people on the street or from your past and think, how do I have this and you don't?  I have so much to live for and you're wasting your life...and I get cancer?  And not only that, a bad one, that's already advanced enough to make some of the doctors you interact with give you that sad look as they say they're sorry.  Poor me.

See...It's easy isn't it?  This usually happens when I'm tired or still in pain or weak from doing too much work, like climbing the stairs 3 times in an hour.  It's destructive.  It clouds your mind and your ability to heal.  It takes away the laser focus that should be honed on caloric intake, regular exercise, mental health.  I start chemo next week and I need to be firing on all cylinders.  I don't have time for these negative episodes and self involved pity parties where I actually think negatively about someone going through the same thing I am.  When this happens, it's an affront to all of those sending me prayers and positive thoughts. 

Thankfully, it doesn't happen often, but times aren't as dark as they are going to get in the near future.  It always hits when you're down.  The trick is to find a way out of it before you fall into the hole.  I try to find beauty in just about everything these days.  We got a new thermometer a few days ago and took my temp tonight because I felt warm.  Low and behold, a low grade fever of 100.5.  I know it's a low grade fever instantly, even before I see the numbers because the display registers an amber color.  I could've been down about the fever.  If that happens when I'm on chemo we have to call the doctor and possibly make a trip in.  But I didn't.  I felt like shit and it was a perfect opportunity, but there was that amber background.  I appreciate efficiency.  So this little device was perfect in it's simplicity.  No need to remember ranges, or look things up on the Internet.  Just 3 colors to remember.  Green=Good, Amber=Low Grade Fever, Red=Doctor's Visit (in my case anyway).  I latched onto this like a vice.  It made me feel good that some engineer somewhere thought about making something easier...and it worked.

We live in a world today where there is an abundance of "poor me" happening all around us.  And it's infectious.  Our children aren't learning to grow out of it and end up becoming "poor me" adults.  Every time it happens to me I feel pretty much instant remorse.  As it gets easier to fall into, I need to find more things to keep me from sinking.  I can only take my temperature so many times, so there needs to be something else.  It's you.  :)  I go back to my support system.  I reread posts and email and comments and I'm blown away at how lucky I am.  All of you are pretty darn wonderful and I so cherish having you in my life. 

Thank you for being you.

Jake

Thursday, November 21, 2013

Back in the saddle

Today was my first day back at work since being told I'm not alone on the inside. I'm getting much better at talking with people about it and it's nice to get out of the house for a bit. It's funny...for all the time I spent at work today, there wasn't a lot of actual work that got done. Today was dedicated to clearing out a swollen inbox and getting all of my ducks in a row for this trip. I met with an Absense Counselor today. We discussed what time can be used for sick leave and what has to be taken out of vacation. Mickey was her name and she was wonderful. (And a Packer Fan to boot! Go Pack Go).  I also talked with another benefits specialist about what happens if I should...move on. So it's good to know that many of the decisions that I've made throughout the years have been prudent and have set the stage for my family's care should I be hit by a bus tomorrow ('cause I ain't plannin' on leaving for any other reason). 

Now it's time to finish all of the other morbid planning. Lots of little things that you just don't think about that really need a plan, even a simple one, to make it easier for those "left behind". Again, I view all of these as worthwhile exercises that should be done by all of us in health as well as sickness. So don't think that I'm focusing on the crappy part of this.  I'm not.  I'm simply making a list and checking it twice. (If I think of it that way will it feel more festive?)  

I suppose I could make a guide for all of the little things that need attention in a situation like mine. Probably a bit too ambitious at this point. I am reminded of a book that I just finished, "An Astronaut's Guide to Life on Earth". It's authored by my hero, Canadian Astronaut Chris Hadfield. During his time preparing for his missions, they would run death simulations. Tabletop exercises that involved all primary and supporting agencies, the astronaut and even their families in some cases. It really revealed where the gaps in both professional and personal planning were. Ever since getting this diagnosis, I've been meaning to go through my own death sim. Just to make sure. No one wants the unthinkable to happen, only to find out during the grieving period that something senseless happened like the Internet getting shut off or the car registration coming due. Then all of the pain is dredged up again just to fix something that could have been caught much earlier. I know. But my analytical side has justified all of this and doesn't find any emotional harm in it at all. 

I'm headed back to work tomorrow to clean out a bit more inbox bloat before I'm out for another week. I also want to get some real progress on a couple of projects accomplished in my last two workdays before my treatment starts. I'm making progress in taking in more calories (more on that in tomorrow's blog) so I'm able to make it almost through the day without a nap. Although, as Tami will attest to, I looked pretty ragged by the end of the day. I didn't feel all that great either. I try not to take pain meds, but last night and tonight it was unavoidable. But it was just one right before bed. I can feel tonight's dose kicking in and turning the raw, stabbing feeling in my abdomen into a gentle murmur (that still screams if I move wrong). The problem with taking the pain meds is that they are a contributing factor to the pain I'll be feeling tomorrow. 

It goes like this...my pain is being caused by Glisson's Capsule. It's the protective capsule that surrounds your liver and has a bunch of nerves in it. Since my liver is growing it is putting stress on the capsule. In a couple of areas I have tumors that protrud into the capsule making it very painful to put any additional stress on it. Well, when I laugh, cry, cough, sneeze and yes...eat, it puts stress on these sites. This is why eating is very difficult for me. Food takes up space and creates gas which takes up even more. The more pressure, the more pain. This becomes a big issue when you can't get rid of what you ate. Yup, constipation makes me crumble and moan and generally have a really bad day. Pain meds constipated you. Sick cycle huh?  It's the reason that I'm buying stock in Miralax (seriously though, this stuff is a life saver). It's also the reason that the day I start chemo will be a day of celebration. 

It sounds so strange to be excited about starting treatment. So many people have a lot of anxiety about it. I find my attitude to be exactly the opposite right now. I can't wait for Wednesday. I may be sick as a dog but I'll be doing something about the pain in my gut. Once these tumors in my liver start to shrink, a world of possibilities opens up. And so does my abdomen. I'll be able to eat more than half an apple without excruciating pain later in the day.  And with more calories, comes more strength. And more strength means better chances. I see nothing but win in this. (Read my blog on my chemo day, or the day after and see if I'm still singing the same tune...)

It's pouring outside so I'm going to close my eyes and enjoy the sound of it now. 

Find something small to appreciate today. 

Jake

Not A Statistic

A very dear friend of mine maintained a blog called "Not A Statistic" to document her family's journey a few year's ago. I found it to be the very best title for a blog about this kind of struggle. So I'm stealing it this morning because it's a perfect fit for what transpired yesterday.

Yesterday, Tami and I had a consult at the UNM Cancer Center and met some very brilliant people. I met a surgical oncologist specializing in what I have who was so special, I turned to Tami after he had left and said, "I feel like spiking a football."  It felt that good to be in the hands of someone so incredibly talented. During his exam, as he was pushing on my abdomen and feeling around my rib cage, he stopped, looked at me and said, "This is where the pain is right?"  It was exactly where my most intense pain has been coming from for about a month now. When I nodded, he told me that he could feel a tumor on my liver. It's pressing out on the nerve filled, protective coating for the organ and causing me serious grief. I was flabbergasted. When he came back he verified that I'm not a good surgical candidate right now, a fact that I had already determined through my own research. But he gave me hope. His absolute knowledge of the subject area, bedside manner, respect for my wife and I and willingness to listen made me truly believe that we can beat this, at least for awhile. 

That was the first doctor I saw and, unfortunately, I won't be working with him again...at least in the short term. The next appointment was with the head of the colorectal department and a big name in the region when it comes to my type of cancer. We were psyched. Then he walked in the room. This is where I have to remind myself to breathe and not rush to judge. Our visit was rushed, the topics were matter of fact with little thought put into how to convey the news being told to us. I'm sure that we were put in to his schedule at the last minute and that he is a very busy guy, but it was one of those freight train moments. He asked if the doctor before us had discussed prognosis and treatment options. I said no. He pulled up a chair and said, "It's not good."  Apparently, I have more tumors in my liver than they could count. I also have some pronounced lymph nodes around the primary tumor site in my colon, so there is a possibility that it didn't stop at the liver. Then he gave me the median survivability term for what I have. Now, it should be said that I've read all of this already over the last 4 days, so it really shouldn't have come as that much of a surprise. But it did. And then it was gone. He had moved on to the next subject, treatment. But there was no gap. There was no pause to see how we were impacted, no moment to let it sink in. He had another appointment and needed to get as much information to us as possible. We talked briefly about clinical trials, timelines for starting chemo, second-line treatments like radiation therapy. And the whole time I was trying not to look like a zombie. It was the epitome of the emotional roller coaster. So high up one second and so low the next. 

I said that he gave us a number.  I'm not going to write it down here.  First of all, it's a statistic based on what they normally see with this disease.  With my age and health, I very definitely don't fit into the normal bucket.   Second of all, it's not relevant to me personally...at least I'm trying my damnedest to keep it not relevant.  Of course there is a ton of planning and preparation that has to be done anyway.  It would irresponsible of me not to.  But I'm hoping that it is planning for the mid to long term and not the short term. 

So the plan is to still get my port in on Tuesday of next week.  We are waiting to see if I can start chemo the next day.  That's what I want to do.  It just feels like the right thing to.  This thing growing inside of me is very aggressive and I want to match it stride for stride.  There is the possibility that I'll have to wait until after Thanksgiving to start treatment which means that I will participate in a clinical trial to see if it improves my chances at responding better or faster to chemo at all.  So a holding pattern for today and possibly the weekend.  I'll let everyone know when I do. 

In all of this I think Tami had a worse day than I did.  I came to grips with my mortality in a startlingly short time frame this last weekend.  It became very real for her yesterday.  Her and I make such a great team and I know that we can weather any storm together.  I finally got to be her shoulder to cry on last night.  I'm sure this won't be the last time that we face news like this.  So be sure to include her in those prayers as well. 

Find your strength in faith, love and peace today. (and everyday really)

Jake

Wednesday, November 20, 2013

Angels Among Us

If there is one thing that this experience has driven home in overwhelming and exhilarating fashion, one thing that I've become so keenly aware of, it is that angels do sit among us. Yes, I always knew this...metaphorically. I know so many amazing people and the world is filled with so many more that I'll never have the joy of building a relationship with. So yes, if you asked me last month if there were angels among us, I would have many examples of angel-like people to list and give you examples of their angel-likeness. In fact there are so many of my friends and family that I would label angels right now, that I would quickly run out of juice in my label maker (I didn't opt for the AC adapter 'cause like really...who needs a label maker to last more than 10 minutes right?).

Yesterday was different though. Yesterday an actual angel appeared in my life. I have known this person for decades and truly would have labeled them an angel before this month, but what happened yesterday let me see their ability to create magic.  I will never look at them the same again. Whenever I see them from this point on it will be with wings.  I'm not going to mention names. This person knows what they did and who they are. The results of their actions have the possibility of completely altering the course of this journey in a very real and positive way.

This should really be a lesson to us all.  We never know when an action on our part will turn into something magical.  If we waited to act until we knew it would be magic, we would literally never do anything.  In this case, what was considered to be something fairly inconsequential by the one acting on a need to help, turned into one of the biggest rays of light and hope on this journey so far.

So go out and do something for someone else today.  Something that you may not have done in the past because it seemed too small to be effective, or you didn't have enough time to do something bigger and better, or you were afraid of how it might be perceived. 

Bring a little magic to the world. 

Show someone your wings. 

Jake

Monday, November 18, 2013

You've Been Staged

Our first appointment PD (post diagnosis).  And really, if you want to be really technical about it I don't have my formal diagnosis yet.  But I don't want to be really technical about it.  I saw what is growing in my colon and can feel the effects of the "lesions" in my liver.  This is all the verification that I need personally.  Yes, there is a very remote chance that this could be "something else".  Unfortunately, the something else would still be cancer.  Just a different kind. 

The key to the matter right now is my age.  35 (for 2 more weeks anyway).  Colon cancer just doesn't strike people my age.  They want to make sure it isn't something that started outside of the colon and has just taken up shop down there.  So we are waiting on a biopsy for the official word.  We will also be taking a biopsy of the liver next week...just to be sure. 

While we wait for all of this verification, we will not be waiting on treatment (YAY!).  The doctor told me that I had already been staged by the CT scan results.  Stage IV.  I used roman numerals for that because a simple integer (4) just didn't feel like it conveyed the gravity of the situation.  Yessir, barricade the doors and stock up on ammunition 'cause we've got a fight on our hands.  Thankfully the thing that makes my case so peculiar also gives me a fighting chance.  My age.  The younger you are, the more aggressive they can be with your treatment and the better your disease usually responds to it.  So bring it on!

I have orders to get my "port" in on Tuesday.  That means that I start chemo on Wednesday.  Yes that is the day before Thanksgiving and even though I can't see anyone because my immune system will be completely blitzkrieged, I still intend to make the best Thanksgiving ever.  I really do have so much to be thankful for.  

For those that aren't in the know (like me this morning), a "port" is a central venous catheter with a port.  Basically, the catheter is a tube that starts in a vein in my chest and ends at my heart.  The port is a structure with a rubber top that they will be inserting in my chest under my skin and connects to the catheter.  This way they can poke me in the port over and over again without causing undo damage to my veins.  Now the rubber top to the port is still under my skin so they still have to get through that, but it's a lot less stress on the body than always taking out veins.  It's also going to leave a quarter sized lump under my skin.  So I'll be like one of those crazy body-mod people who put silicone spikes on their foreheads.  In all seriousness I'll have a commonality to share with an amazing and beautiful person I know that has a bump on her chest too.  But hers is a battery which is pretty wicked cool compared to my port which will require monthly trips to the doctor to have it "flushed".  Eeeeeeew.

All of this happened at the New Mexico Cancer Center this morning.  And while we didn't find anything heinously wrong with their programs, we weren't over impressed either.  Since nothing is happening this week, I'm trying to get into a consult at the UNM Cancer Center as well.  I hear they are the bees knees.  :)

I take the previous statement back a bit...I did find something heinously wrong there.  Still running Windows XP everywhere and laptops on counters for nurse input use were open to the outside of the "pod" and into public traffic paths and *gasp* were never locked when unattended.  As a computer security guy I'm pretty messed up about this.  If it weren't for the whole life threatening disease growing in my gut right now, I'm sure I'd be pitching a fit.  If I do stay as a patient there, however...I will be talking with their IT department about lax security and possible HIPPA audit violations. 

Time to lay down for the afternoon and enjoy some time with my amazing wife.  I'm actually going to go back to work this week, possibly even tomorrow.  We'll see how that goes.  ;)

Tell someone you love them today.

Jake

Sunday, November 17, 2013

Bonehead

I thrive on data. I don't know why. I have to know everything about a situation that I'm involved in or I feel lost. Listless. There are times when I do stupid things in the name of research or data collection. Tonight was one of them. 

It started out innocuous enough. I had backed up my ultrasound and CT results (pictures and reports) a couple of nights ago so that we would have a copy in case one of the radiology labs kept the discs as we ferried them from place to place. Point Jake. 

As I looked through the files that were on the discs I couldn't readily find any actual images. Just a bunch of XML files pointing to LINK files for the images. Then I found them. In no immediately recognizable format. You needed the viewing program on the disc to see anything (without a little work anyway). It was all windows based and I didn't feel like digging out an old laptop or my work laptop and everything else we own is a Mac. So that's where it ended. 

Until tonight. I had to charge the work laptop anyway so I booted up, put the CT disc in and ran the program. (All of which while Tami was in the shower and Myah was at her grandparents' house.)  I tootled around in the interface a bit and found out how to move through my insides. All great fun until I hit my liver. 

For those following, the colon cancer is really the least of my concern. It's the liver, where that cancer has most probably spread that is the real problem. I won't discuss what I found. It's enough to say that I'm not a doctor or a radiologist and I can't even begin to comprehend what those pictures actually mean (a fact that my wife will now forever remind me of). At that point...alone, with a thousand things racing through my data craving brain and nothing but the dog to talk me down...I lost it. In my irrational, tired, shocked mind it was a good as a death sentence. 

After coming out of the shower to a husband who can barely talk through the sobs, my amazing wife righted the ship. The half of this team that is usually emotional and unseeing to reason saved my life again. This is why I hold this woman in the utmost of regard. Even when she calls me a bonehead. Indeed it was an absolutely boneheaded thing to do. Rash, impetuous...stupid. 

And as she held on to my bootstraps and pulled me from the precipice of an emotional breakdown she kindly informed me that I will be looking at NO more pictures of my insides without a doctor present. Final. No discussion needed. 

Thank you for yet again being my hero Tami McManaman. I'm sure this isn't the last bonehead thing that I'll do in this life, so I'm extra thankfull to have you to catch me when I fall. 

Jake

I'll focus on tomorrow. You focus on the next twenty years.

"I'll focus on tomorrow.  You focus on the next twenty years."  That's what Tami said to me last night before bed.  I have been having issues focusing and sleeping over the past two days.  My mind just keeps racing.  It has been just 48 hours since I got "The News", and despite having a mostly positive attitude, I'm still trying to figure out which way is up. 

I'm a planner.  That's my problem.  I want to be sure to have a plan and be prepared for all contingencies.  In this case, that also involves my demise.  "Don't give up before we even get started."  Another nudge from my amazing wife.  She's right of course.  But it's so hard to think about much else.  Only two days in and I haven't even had a proper oncology appointment yet.  For Tami, that means that we don't know what we don't know, so the only thing we should focus on is the next 24 hours.  After a brief dialog about how I don't want to squander time just in case I get more bad news next week, and that I'm not focusing on the the end, it's just the only thing I can plan on without any more information, she ends with a single bit of advice.  "I'll focus on tomorrow.  You focus on the next twenty years."

When I hear it, I'm amazing at it's simplicity.   It gives me an actual goal.  Something I can count to. 20.  Everything I've been reading focuses on 1 year or 5 years with cancer.  While I understand the necessity of those numbers, they don't work for me right now.  20 is something I can get behind.  It's not tied to remission rates or survivor statistics.  In fact it has nothing to do with cancer at all.  It let me look beyond the next few frightening months.  And it worked like a charm.  I fell right asleep.

Now that I've had a chance to shake off the cobwebs of the night, her statement clings onto my brain like a dryer sheet stuck in the leg of your sweatpants.  The rational part of me realizes that it would be a fools errand to only focus 20 years out.  But it's easier for me to wade through the noise in my head now.  I started diagramming out everything that we need to start thinking about.  Short AND long term.  This planning and organizing helps take my mind off of the immediate uncertainty oddly enough.  I've got a mind map started, and I decided to start this blog.  It's a repurposing of my old (and hardly updated) security blog. 

I can't honestly say how much I'll update this thing.  But it seems as though I may have a lot to say now that my life has changed in a pretty dramatic way.  So check back from time to time. 

Live life.

Jake