Weakness

For the last 3 days I have been sapped of strength and energy to the point that it's been a struggle to open my eyes and get out of bed.  I've spent more time on the couch than on my feet and my family has watched me struggle with simple tasks.  Myah finally saw some of the reality of my situation as I fell in the kitchen while Tami was in a lesson and I was trying to dinner together.  She handled it pretty well, but I have noticed that she's hugged me more than she usually does since then.

I've had to take more time off work this week than I was expecting, which is hard because I have a project that is in danger of falling behind if I can't get there this week.  I hate to take so much time off, but I don't know what's happening with my body right now and I just can't do it.  It's hard to look even half a day of work in the face when it takes your wife standing next to you and helping you to sit up just to get you out of bed. 

Needless to say, it has been a very demoralizing period for me.  I don't feel like I can contribute in any way and that I'm placing a much larger burden on my family.  I'm also having a lot of pain in my abdomen again.  Pain that had gone away for a while.  This can mean many things, but for someone who has very little will to fight right now, it just means that I'm getting sicker.  This does not bode well for my emotional state.  I've been holding back tears for days.  Sometimes I can't.  Two days ago, I was stuck on my bed while my parents waited to see me downstairs.  I just couldn't see anyone.  Thankfully, I pulled myself together and finally came down before they left and got to spend some quality time with them.  But it was a struggle.

I had to go back to a previous blog that I wrote about not letting myself be sick (here) to provide some inspiration on how I can get moving this afternoon.  I have yet to see if it works, but I'm determined to try.  My goals for this afternoon are to fold laundry and find some way to get moving.  We'll see if it happens.

I'd like to end with a little positive witticism like I usually do, but I just don't have it in me right now.
Jake

A Mixed Bag

Well, the Doc didn't ask if we wanted the good or the bad news first. He led out exactly the way he should have, and told us that the CT results didn't look good. My tumors have been incredibly aggressive and have spread like wildfire throughout my liver.  He showed us the pictures and golly gee whiz...they really don't look good at all. It's like one of those small parties that gets blasted out on Facebook and 10,000 people show up and trash the house...that's my liver right now. That's the bad news. 

The GOOD news is that he is sure that we have the right drug combination now. Not only was the other drug killing my liver, it wasn't doing a damn thing for my tumors. It's like it was trying to kill me twice as fast. Glad I'm off that one!  :)  We know that the new drug is better because all of my liver numbers are going in the right direction now. My enzymes and bilirubin are all coming back down to normal levels.  This means that we can start some pretty aggressive treatments on my liver soon. I will hopefully be going into radiation sometime in March, and our options don't stop there. So...exciting!

The other good news is that it hasn't spread anywhere else in my body. I still have the primary tumor, as well as the party in my liver. And I still have a couple suspect lymph nodes down around the primary site, but (and this is important for me) my lungs are nice and clear. This cancer likes to go from liver to lungs, so this was a big concern for me, especially considering the aggressiveness of it. 

He asked how I was handling the new drug and I told him it has been an incredible difference over the last one. You are all familiar with my feelings on my new drug vs. the old drug, but there is another benefit as well.  Between each treatment on the old drug I would lose between 5 and 8 pounds. I weighed in today just one pound lighter than I was two weeks ago. That is HUGE!!  I can't tell you how happy I am with that result. I've been eating more and have been feeling better. 

So yes...this morning was down and up. But the Doc was smiling and saying encouraging things, which is helpful because he's not one to sugar coat stuff.  That made it better on us. I'm writing this with my infusions starting. Pretty soon it will be nap time (one of my drugs knocks me out).

Social media can be a dangerous thing kids.  Periodically review your privacy settings and see who can view your posts and events. You might just end up with 10,000 people at your small, intimate gathering. That would ruin any party. 

Jake

Work

Tomorrow (Monday) is supposed to be my first day physically back at work since before Christmas. And I'm scared as hell. I never know how I'm going to feel when I wake up in the morning. I may be stuck in the bathroom for an hour or over the sink heaving because I didn't eat in time. And when I wake up refreshed and (somewhat) chipper, I may only be that way for an hour before I have to lay down. How does that bode for a dual 40 minute commute and a 4-6 hour day on site (splitting the day between home and office)?  With all of the challenges that I go through on a daily basis, how can I possibly go back to work?

Because I have to. I made commitments. To my team, to be there and contribute. To my family, to earn a living and provide. To myself, to get off my ass and start living my life instead of my disease. But ultimately I have no real choice at this point. We are a single income family and the wonderful health insurance that is helping me fight this disease comes from my (awesome) job. Yes, I have sick leave and long term disability...but those are nuclear options. I need to work while I can as long as it doesn't provide a hindrance to my health, my healing, my teammates and most espescially, my family. 

The hardest part of this from a mental standpoint is looking at the runway in front of me. I got diagnosed on November 15th. Shortly after we had Thanksgiving holiday. And just a few weeks after that we had Christmas shutdown and I got to stay home for two whole weeks. Now I'm faced with little vacation, precious sick leave and a long barren desert of days off. On the positive side, I'm hoping to develop a routine. On the realistic side, my reality prevents things like routine unless you're talking about pain pills and hydrating. 

I know this won't be easy. I get to the parking lot in the morning and my energy tank is already half gone. I still have hours of configurations, planning, meetings and everything else that work entails. And to top it off...a drive home. But it is necessary. It is necessary so that I may live my life and not my cancer's. So that I don't spend day after day steeped in sickness. Yes, those days will be unavoidable. But when you can will them away, if only for a bit, it makes you feel stronger. It makes you feel healthier and more capable. 

That's why I have to go back to work even though every fiber of my being is trembling right now. I don't know how tomorrow will go, but regardless of the outcome I will always have the next day to try again. 

I talk pretty big don't I?  ;)  I'm going to try to honor my words and myself with this one. 

When faced with an insurmountable challenge that makes you tremble in your boots...find a way to look past it at everything that you gain from confronting it. In this case, I keep my job, meet my commitments and distract myself from what is happening in my gut.

Now if I can just remember that in the morning. *big smile*

Jake

Accomplishments

Friday didn't start out as a day that I thought would be filled with accomplishments, but in the end it turned out to be a pretty good day.

I've been having well publicized issues with sleeping. I wake up from body pain due to a weird position that I've moved into or I wake up from abdominal pain due to a weird position that I've moved into (or trapped gas...that's another popular one). But I do this probably 10 to 12 times a night that I can verifiably remember. This means that my normal morning routine, getting up at 4:30 to get out of the house by 6, is in serious jeopardy. So I asked my Dr. about some options for sleep management. I also asked him about options for anxiety with my impending "first" review coming up next week. To both quandaries he recommended the same thing...50mg of Benadryl. Yes. My mouth opened just as wide. But, he is a smart man, so at 3:00 Thursday night I took my 25mg (because I was taking it at 3 instead of at bedtime) of Benadryl and my pain pill. I slept until 6...like a rock. Apparently when you lose 35 pounds in 8 weeks, things hit you a bit differently than before. Then I fell back asleep until 6:45 when I woke up drenched in sweat...sheets and all. 

At this time I still intended to work. But the Benadryl had different ideas. After spending an hour in the bathroom (non Benadryl related) and a nose bleed that required extensive work to both control and contain, I thought that maybe a half day was in order. I grabbed some breakfast and soon after started passing out wherever I stopped moving. Tami, in her infinite wisdom, suggested that I take a nap. Usually I scoff at these ideas and I really wanted to get a half day of work in. But Tami and the Benadryl won out. After a nice Snoogle assisted nap and a shower, everything was again right with the world. Once I realized that I had slept it out of my system, I visited briefly with my cousin who also has recently been diagnosed with cancer and took another nap.  It was then that the day was too far gone to get any work done at all so I called it a full sick day.  That's what happens with this thing.  Sometimes you're on and sometimes you're not.  And you don't get to choose. 

I know what you're wondering...where are the accomplishments?  Well here they are...even though my day started me out on the wrong side of the bed, in the wrong direction and on the wrong foot...I managed to surprise myself. 

I finally got on the exercise bike. I only did 5 minutes and wondered if I would need help down the stairs (which I didn't). 

Then I did exercise bands while watching Rick Steve's Europe. 

Tami and Myah were out all day with errands so I was on my own. After all the work I had done, for some reason I really wanted a Taco Bell bean burrito. Like more than anything. But the girls were taking too long and I needed something to eat right then and there. It was then that I realized that I had my wallet and a set of car keys. I'm not strapped to the couch. Heck no!  So I did it. I went to Taco Bell and ordered 4 bean burritos. Then I came home and ate one. The entire thing. 

Then I helped with the laundry and cleaning the kitchen and had a semi full dinner. 

Then, at 8:00 pm I had another burrito!

And to top off my late day accomplishments? I finished off the Haagen-Dazs coffee ice cream. Oh yeah. 

But the biggest accomplishment?  I only lost a pound this week.  That's right.  I've been losing weight like a mad man, sometimes at the rate of a pound a day.  So to lose just one pound in an entire week is huge for me right now.  I'm hoping to limit the loss to just one more pound next week...or even gain my pound back!  Yeah!

None of these are earth shattering and it would be easy to look at each one and think, "That's all?"  Trust me, I do it everyday and everyday I have to remind myself (or Tami has to remind me because I'm too mired in self pity) that these are the things I need to focus on.  Each one is a win.  Each one is something that I haven't done before in my new reality.  Each and every one is important.

So the next time you do something small and seemingly insignificant...delight in it.  Take the win, even if it isn't a big one.

(I'll be trying like hell to follow this advice, but I have unrealistically high expectations and will still need Tami's help to get me out of the pity pit from time to time.)

Jake

Differing Perceptions of Courage and Inspiration

I have been writing this blog since the 17th of November and have had a wonderful response to it. Many call it inspirational and courageous. Everyone agrees that my positive attitude is amazing considering the circumstances. In general, even though I deal with some tough issues, I try to leave things in a "feel good", if not just "feel better" state. And I've done a pretty good job at portraying how I feel when I feel positive.

The issue is that my online persona's positivity may be a bit misleading at times. You see, these are snapshots in time and I typically only write them when I have the energy and motivation to. When I have energy and motivation, things are usually pretty good. For those that spend the most time around me, reading my posts and the reality of my situation don't add up. So, while every positive affirmation and silly anecdote is completely sincere, it doesn't paint the full picture. 

It doesn't talk about the times when I'm so exhausted that I simply burst into tears. It doesn't talk about the constant pain that I'm in that forces me to lose hope on a daily basis sometimes. It doesn't show the contorted body positions and facial expressions, like going through electric shock therapy, that happen every couple of weeks. These are the times that stick in my caregivers' minds. 

The conversations of going off chemo and giving in to palliative care so I can end this sooner and not put everyone through the wringer. The off hand discussions of how they are currently debating Dr. assisted suicide in NM. When my pain pills start losing their effectiveness and I "tough" it out over the next hour because I don't want to change to strength or frequency of a narcotic and I practice lamaze just to tell them that "I'm fine."  These are the words that those who are close to me find it hard to reconcile when they read my posts. 

Now... am I like this all the time?  Of course not. But these times sure do make a bigger impression than others when you have to see them every day.  So I can see their points. My caregivers are limited to my loving immediate family right now, so if my wife isn't here my mom or my dad is. These are the people that see the red headed underbelly of this cancer (yup, haven't lost my hair yet). And they are the ones that I want to thank the most for getting me through those times that I can't get up the stairs or can't stop crying or can't get off the couch. Basically, those times that I gloss over with my style of writing. 

Of course I want to present the strongest, most positive front possible. I always do that, which is why Tami has to go to my Dr's visits with me, so that she makes sure the real story is told. So maybe I'm a bit less inspirational and courageous sounding in the future. I want to be honest, so there may be some darker things that show up here. If you don't want to read it, filter out everything with the tag "rant" in it. If it's not my usual happy go lucky self I'll make sure to get that tag on there. 

Thank you so much for keeping up with the blog. It is a great tool for me to heal, share and inform. 

Jake

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

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