If you do anything long enough, it becomes old; for me, chemo hit that point somewhere between round 2 and 3. Nevertheless, chemo is now a necessary evil in my life, so why not give it a soundtrack. Disturbed’s cover of The Sound of Silence seems appropriate, particularly the intro “Hello, darkness, my old friend, I’ve come to talk with you again.”
Darkness is a perfect word to describe chemotherapy; it transforms someone who feels reasonably well into an amorphous blob. It’s for that reason departing my house for round 3 of chemo, was more trying than the previous two times. I believe the exact words I told my chemo buddy Garrett were, “I don’t wanna” as we walked out the door and set off to tackle round 3. Sticking to the usual pre-game routine, we stopped at Hardee’s to load up some excellent breakfast before my poisoning session.
First, I kicked things off with labs as usual. I still had some swelling around my port from my previous ER visit, which meant two pokes for my port access, once with a 3/4″ needle to verify it was too short, and then a successful stab with a 1″ needle. While I was in the lab chair, I got an abrupt reminder of just how fragile we cancer patients are as I witnessed an EMS crew take another patient out on a stretcher.
Then it was on to my appointment with my oncologist. This time, I had a lot to discuss since I visited the ER with a headache after the previous round. The oncologist believed the problem was likely the result of dehydration, a side effect of taking Zofran (anti-nausea), or a combination of both. He recommended sticking to Compazine this time instead of Zofran to see if that helped. He also agreed that I should continue receiving fluids at home to head off any dehydration I may have. I also got put on another medication to combat oral thrush (yeast infection) which is a neat little parlor trick chemo decided to serve up. I got thrush after both previous rounds as well, and for that, I used a Nystatin mouth swish. That only made it temporarily retreat, vowing to seek its ultimate revenge, so this time a heavy hitter was required.
Then it was off to the chemo suite with Garrett (aka “My Big Sweetie”). Garrett and I have been good friends since my freshman year of college, and we’ve been through a lot together, and now we can add chemo buddy to that list.
My blood tests were all excellent, so my dosage remained the same as last time. Once I was hooked up to the first two-hour infusion, it was game time. Channeling our inner old men, we busted out the cribbage board. Some context, before we continue; out of all the games of cribbage we’ve played, I’ve never beaten Garrett. I started with a commanding lead, but about halfway through the game, I started having trouble counting my [massive] cribs as chemo brain set in. Not being one to give up, we continued playing, I guess the secret was being hooked up to some ass-cancer killer because I FINALLY skunked him. Then it was on to a chemo brain level game, UNO, until the infusion finished.
This infusion went a bit faster than others since we have the routine down to a science. So, after being hooked up to my chemo grenade, we departed for my house.
My wife and kids got to enjoy some camping at a nearby park with her brother, his wife, and her nephews. Therefore, I got to have a sleepover with my big sweetie! Let me tell you; there isn’t anything wilder than a sleepover with two middle-aged dudes, especially when one of them just had chemo. After watching a documentary on Chernobyl and a few Netflix comedy specials, we were out by 10:30 PM. Ironically, thanks to the chemo, I woke up the next morning feeling just as hungover as some of the college parties Garrett and I used to have. I’m so grateful Garrett was able to sleep over so my wife and kids could enjoy some normalcy.
I made it to my disconnect day without puking or complications, and Elaine is perfecting her nursing routine. This time they threw a monkey wrench in things by using a 1″ needle, so it was a bit trickier to pull out, but she still nailed it.
Then it was on to the part of chemo I dread the most, the game of side-effect roulette. Here’s a sampling of the things that run through my head continuously: Am I tired because of the chemo, or is something more serious going on? I just scraped my finger, am I going to get a massive infection? Oh great, the guy next to me at the grocery store just hacked up a lung, am I going to get sick? Did I normally get winded when taking out the trash?
I made it to Wednesday and didn’t get any headaches, so maybe it was the Zofran after all. After the previous sessions, I usually starting to feel a bit better by Wednesday, but not this time. I was more tired than usual, and my brain fog warranted a lighthouse. When Thursday afternoon rolled around, I started getting chills. I took my temperature, and it was 100.0°F. That is 0.4°F away from the danger zone. Not trusting the QA person at the thermometer company, I decided to call the oncology triage line to be safe. After listening to all my symptoms, they recommended I monitor my temperature closely and to drink extra fluids because sometimes a fever can be a sign of dehydration. They said if my temp reached 100.4°F, I should go to the ER. So that’s what I did, I slammed water and Gatorade and obsessively took my temperature hoping I didn’t have to see Dr. Awesome in his ER again.
By the next morning, I had no fever, which was an excellent sign; I was likely just dehydrated. The nurse requested that I give them an update in the morning, so that’s what I did. I let them know that my fever was gone, but asked them if it was normal that I was still feeling worn down when I usually started feeling better much earlier. Then she kindly reminded me that the effects of chemo are cumulative, which is likely why I wasn’t feeling better yet. So that’s something neat that I get to look forward to for the next 5 sessions.
As I’m writing this, it has been ten days since the infusion, and I’m finally starting to feel normal again. It also appears that I’ve started building an ass cancer-fighting soundtrack throughout these posts. So, I might as well dedicate a song to the post darkness phase between infusions. Its almost as if the philosophers behind the movie Trolls were channeling me with the song Get Back Up Again so I’m going to have to go with it.
My next infusion is scheduled for this Friday, exceptionally early in the morning. In theory, after this infusion, I will have reached the halfway point in my chemo journey. I say in theory because everything depends on the results of the MRI and Splash Zone scope study to determine how well the treatment is working. If it is working well, they may stick with the planned 8 cycles, or they may add more. If things are not working, we may need to go back to the drawing board. So we shall see, but for now, “there’s nothing getting in my way, and if you knock knock me over, I will get back up again.”
Lessons learned from round 3:
- Hydrate, hydrate, hydrate, then hydrate more
- Keep a medication log, it helps doctors and nurses track side effects better. That’s how we figured out Zofran may have caused my headache.
- Sometimes you need to bust out the heavy hitter against thrush
- I can beat Garrett at cribbage
Just got done reading your blog Ben. I pray for you every night. God has blessed you with a wonderful family and fantastic friends. Hang in there. You are going to beat this. Keep up the good attitude. That’s half the battle.
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I am indeed blessed. Thank you for the continued prayers and support Ellen, it means a lot to me.
> I can beat Garrett at cribbage
We’ll see how well ya play when we’re four fingers into that scotch! 😀
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I’ll gladly accept that challenge! Can’t be any worse than chemo brain.
We have never met, but your wonderful mother is a dear friend of mine. I pray for you every morning. The Lord loves you immensely and I pray you feel his strength, especially during the more difficult moments. I know you will beat this ” ass cancer”.
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Thank you Therese! I feel the strength every day, it helps me keep moving forward even on the hardest days. Keep the prayers coming!
Ben, you are the best kind of patient, you are paying attention to yourself, your symptoms, side effects, this helps the medical staff, you are your best advocate, keep up your good work. You have the most awesome attitude, and these blogs are so helpful for others. I must say I was overwhelmed when I first learned of this chapter in your lives, I pray, as all are, for better health, less side effects from chemo and that your beautiful bright side continues with these blogs. I am sure they are saving more folks than you know. And congrats on the cribbage WIN.God bless you Ben. Melanie
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Melanie, thanks for the reassurance! Sometimes I feel like I’m too aware/paranoid on my side effects but it’s nice to hear a nurse’s perspective! 🙂