So, how am I doing? Something I ask myself several times a day.
I'm okay, but that answer can mean different things based on what week and day of that week it is. I get my chemotherapy and study drug infusions on the first and third Monday of every month... for as many months as I can physically stand it (nobody makes it past 12 infusions in a row). This is how I measure time now, it's either infusion week or pre-infusion week.
Today is Monday, April 21st and at this moment I'm getting my 6th infusion. Each one gets progressively more difficult; the side effects kick in earlier and last longer. My fingers are now always cracked, bleeding and sore. There are currently three fingers suffering, down from seven, my peak last weekend. For eight days, both hands felt like they had been slammed in a door.
The fatigue days increase by one with each infusion. The first infusion week I crashed on Thursday. The second infusion week, added Friday. By the fifth infusion week I had to rest at least every two hours before crashing in the midafternoon on Wednesday and continuing until Sunday. Although Sunday didn't have the midafternoon crash.
The fatigue crash often doesn't involve sleep, just laying down, sometimes eyes closed, sometimes not. I always listen to either a podcast or music album so I can tell if I slept and for how long. These are what impacts my day-to-day life most of all.
We were prepared for the fifth infusion week by asking my mom to stay with us from Wednesday-Saturday and my brother Travis and his two boys to stay Friday-Tuesday. This was a huge help getting Lauren through busy season at work. Now that she has "left" the corporate tax world to work for a public accounting firm, she has to care more about the April 15th tax deadline as well as the October 15th corporate deadline.
It's possible I have six more infusions to go, depending on how much my body can take. When the neuropathy (finger numbness) gets really bad they stop before it does permanent damage. I guess that's why nobody makes it past 12 infusions... so that's good, right? Right? The chemo is working and the study drug appears to be very effective at reducing the size of the spots on my liver. I am making greater progress than was expected, so there's the good news.
Pre-infusion weeks are spent making up for lost time. I clean and reset the house. Catch up on laundry. Do yard work. Go shopping. These are the things that color my life. Since cancer, everything turned black and white. The daily routine has become color while everything else remains black and white.
I realized this when, despite our best efforts, my wife and I just couldn't feel the Christmas spirit. You'd never know it in the pictures and the boys won't remember it that way but the special occasions have no energy and quickly disappear. Even though we feel like we are going through the motions of celebrating the holidays, it is a good reminder of what is really important these days. Thanks to the family and friends who help lift our spirits in those moments. We had a nice Easter, despite not coloring the eggs we hard boiled.
So... how am I doing? There's a light at the end of the tunnel. That's good, but it's one of those lights that doesn't appear to be getting any closer. I know I'm moving towards it but the journey doesn't feel like it's getting any shorter.
I guess I'm doing okay. Well, I'll be doing okay. Soon, I think.
A nurse gave me this pin today. Nice.
