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 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!!!)



  1. I hope you and your family have a very blessed and happy Thanksgiving. I'm glad your first day went so well. Keep that positive attitude and wear that fanny pack of power like a boss!

  2. That fanny pack reminds me of the one you would wear during band camp. Go Jake!

  3. Fanny pack of power!!! I love and admire how you are tackling this head on, guns blazing. I am sure not every moment is so gung-ho, but hang in there. Sending positive energy your way along with prayers and a wish for a happy Thanksgiving with your family.