Saturday, November 30, 2013


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 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 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.  :)



  1. 6 Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. 7 And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.
    Philippians 4:6-7 New American Standard Bible (NASB)

  2. If there is one thing I have learned as a nurse its that sometimes people are afraid of pain meds. It seems like they are afraid of addiction or that foggy feeling that can come with pain meds and missing important things or they feel like they should just be able to "tough it out". But the human body heals faster when it is not in pain for a variety of reasons. I'm glad you are making peace with your pain meds:) Hopefully they get you through all that surgical pain so that you can heal faster!