I’m not sure what was harder, going into the first round of chemo not knowing what to expect, (barring what I knew from the shock and awe side effects talk) or going into round two knowing how awful I was going to feel in a few days. Nonetheless, I rallied my round two chemo buddies and away we went. This time my Mom and two of my sisters made the trek to the university with me.
Like round 1, after checking in, I awaited lab draws, not much changed this time except for the fact that I applied lidocaine-prilocaine 2.5-2.5% numbing cream before our 45-minute commute to the medical center. One of the tips I got from my wife’s cousin was to apply the cream and cover it with press and seal since it would soak into a regular bandage. I don’t have a problem with needles, but why feel yet another discomfort if it’s not needed. I’m pleased to report that the cream worked like a charm; I hardly felt anything when they accessed my port.
I met with my oncologist to review the results of the blood work and to discuss how the last infusion went. Thanks to the chemo brain, I made sure to write down all my questions beforehand, After carefully reviewing my questions and first experience in the side effects dungeon, I asked if I could get some IV fluids to see if that made things better. The doctor agreed and put in an order for one liter of saline, to be started after the home health care nurse disconnected my chemo grenade. The blood work showed that I bounced back very well from the first infusion; some of the results were better than before I had chemo. My oncologist must have been a heck of a party animal in college; since I bounced back so well, he increased the dose to see if I could tolerate a more aggressive approach. You have to love the puke and rally approach to whomping ass cancer.
With my entourage in tow, we made our way back to my chemo suite. Luckily it was roomier than my last suite, so the four of us had plenty of space. One of my sisters is an RN in an ICU, so she was taking in everything, I’m sure it’s was interesting watching how another hospital unit ticks. I remember when I was 12 seeing my sister as a newborn, and now she was nodding knowledgeably as the nurse explained the anti-nausea drugs and ass cancer killing poison she was about to give me — my how times flies. My younger sister (who is single by the way – send resumes via the contact section) is studying nuclear medicine. We didn’t get to meet any basement dwellers in the radiation oncology department this week, but I know who will be tagging along for those appointments.
Once my two-hour infusion countdown began, it was game time. I’m not sure how many times you need to do something to make it a tradition, but games and chemo infusions feel right. My Mom bought a game for us called Left Center Right (LCR). It’s a fun dice game that is very quick to learn. After being stomped by my sisters, we moved on to Flux. Flux is a game where the rules and goals change based on the cards played. It can get quite complicated to track the changing rules, so we needed to stop once chemo brain set in. It was time to switch to Apples to Apples. Being a word game and all, I dominated, however, one hour and fifteen minutes into the infusion, I started to hit a wall. Queue the numbness and tingling in the feet and hands. The heat packs and a heated blanked still did the trick.
After the Oxaliplatin infusion wrapped up, it was time to get hooked up to my 5-FU chemo grenade and then we were free to go. This infusion went a bit quicker since I was familiar with things, and they knew I wouldn’t have a severe immediate reaction. We were in and out of there in about 5 hours.
Then it was time for my Mom to face her panic monster, rush hour traffic in a major metropolitan area. Let me paint the picture for you; my Mom lives in a city with literally ZERO stop lights, and maybe a hand full of stop signs. There are more cows than people, the closest proper grocery store is “just down the road” 25 miles, and her version of rush hour traffic consists of getting stuck behind a John Deere. So yeah, my Mom driving in rush hour traffic is the ultimate self-sacrifice for love. She mastered the stop light metered merge and didn’t even manage to get flipped off by a single driver. She did a fantastic job, and we arrived at my house in no time flat.
I could tell my dosage increased; I was utterly wiped out by 7 PM, so I called it an early night. I learned to stay ahead with my anti-nausea medications during the first round, so I made sure to set the alarm to take the next does in the middle of the night. When I woke up the following day, I felt fine.
Saturday came and went without a hitch; I made it to Sunday, chemo pump disconnect day. Like last time, the nurse arrived and unhooked me from the chemo pump. Instead of de-accessing my port, she hooked up the bag of saline and trained Elaine on the art of flushing my port and removing the needle. So there I sat for about three hours while the fluids slowly dripped in. Now it was time for Elaine to put her training to the test. She flushed the port, definitely an A+. Then it was time for the main event, the removal of the Huber needle. These needles are bent at a 90-degree angle and have a safety mechanism om them, so it isn’t as easy as grip and rip. On the first try, Elaine gripped the yellow tabs and attempted to rip it out. We found out after I yelped that this wasn’t exactly the right technique. An honest mistake or revenge for the “splash zone incident?” On the second shot, Elaine lifted the tabs and found a set of transparent feet underneath. She held on to the feet and then pulled the yellow tabs straight up, and it came out without any problems. It turns out the feet are a safety mechanism that allows the needle to retract into a protective shieth, so it doesn’t stab the caregiver. We took it easy the rest of the day.
Then there was Monday, I could have done without Monday. I woke up to a splitting headache, probably the worst I have had in my lifetime. While the kids were getting ready for school, I decided to try a shower to see if would help the headache. After washing up, the pain got worse. It felt as if someone was tugging on the back of my eyeballs, creating a tremendous pressure whenever I’d move my eyes. Then nausea man crashed through the window and informed me it was time to hurl, like right now due to the pain. Little did I know my six-year-old was in our bathroom getting ready for school. She got to witness a trama inducing show as a dripping wet, naked, half-balding grizzly bear charging for the toilet feet away from her. After performing my rendition of throat singing into the toilet, my daughter seemed remarkably unphased by this. I’m not sure if that’s a good thing or a bad thing at this point. She just asked, “woah dad, are you okay?” What do you answer at that point? I’m a naked, balding sasquatch crouched by the toilet, with a mindblowing headache, having just revisited supper. “No, not really, but I’ll get better.” Apparently, that sufficed, as she strolled out to get breakfast.
I crawled back into bed and closed my eyes, it was the only thing that seemed to help the pain. We called the oncology triage nurse to ask for advice. After asking a long list of questions, they paged my oncologist to ask for his recommendation. A short time later, the nurse called back and informed me that I should go to the ER, as my chemo drugs put me at increased risk for stroke. I’m incredibly fortunate that Elaine had the day off, so we jumped into the car and headed to the ER.
Rocking my sweet pair of shades, we rolled into the ER and met with one of the coolest doctors ever. It was almost eery how much he reminded me of myself. As we made small talk, Elaine mentioned this blog, and he actually pulled it up on the screen to check it out. It turns out he has an interest in blogging and photography. After a quick assessment to rule out a stroke (it wasn’t a stroke), he ordered a blood draw and a head CT to try to figure out what was going on.
So the port that was de-accessed, got re-accessed, labs were drawn, and more fluids were pushed. The labs showed my white blood cell count was 2.2 for reference, the minimum normal range is 4. The manual differential showed my neutrophils were at 20%, which is pretty low. This means I’m incredibly prone to infections and illness, aka no bueno.
Based on the blood tests, the doctor determined the best course of action would be to treat the headache with a cocktail of meds and undergo the head CT to rule out brain tumors and other scary shit. The first drug in my cocktail was Benedryl. I’m sure most of you have taken a Benedryl in your lifetime, it makes you sleepy. Try mainlining that stuff right into your ticker, ten seconds after the drugs were pushed, I was face punched by the Sandman. Combined with Reglan, it is supposed to fight headaches, so that was the next drug the nurse pushed. Ten seconds after the Reglan was injected, I started feeling like I was having trouble breathing. I asked the nurse to be hooked up to the pulse-ox meter just to see. It was reading 99%, and my pulse was 65 beats per min (BPM). Maybe it was just the Benedryl.
Nope, a few moments later, my heart rate started creeping up, 80, 90, 100. At this point, I was crawling out of my skin, sitting sucked, laying sucked, Elaine rubbing my back wasn’t right, nothing. The nurse called for reinforcements, and boy did she get them, I went from headache to ER VIP really quickly. I’m not exactly sure how many people were in the room as I was transitioning from Bruce Banner to the Hulk, but it was a full house. They stuck EKG leads all over me, and my heart kept climbing, 110, 125, 160. At this point, I was panting, these guys injected me with liquid marathon, mile marker 26 serum. I was approaching full hulk mode now as my heart hit 165, then 175, this is the point where I thought I wasn’t going to make it. This was the worst feeling ever, I reached for what I thought was my wife’s hand, it wasn’t. I tried to hold the nurse’s hand, somehow I managed to mumble out “Whoops, you’re not my wife.” Which is probably the only time you can say that without getting divorced.
Unfortunately, I wasn’t done, the hits just kept on coming, my heart hit 180, 185, and then 190. At this point, I was out of my right mind. I was doing everything I could do to breathe, stay calm, and not die. I don’t know if the doctor gave some Calmthefuckdownital or if nature ran its course, but 7 hours (hulk time) later (maybe 5 minutes real time), my heart rate started coming back down. Five minutes later, the Hulk checked out, and I was back again. What a damn ride, it turns out I’m allergic to Reglan. The good news is that I didn’t give a shit about the headache at this point.
Time to go from one ride to the next, now it was time for a head CT, which only took five minutes. Then it was time to sleep off the Benedryl while the doctor reviewed the results. An hour or so later, the doctor came in to tell me the good news that I didn’t have brain cancer or any other scary shit. He also paged my oncologist to discuss the results and get recommendations from him. They hooked me up to the second bag of saline, to ensure I was nice and hydrated, and then it was time to rest again as we awaited a call back from the oncologist. As we waited, we could hear chuckles coming from the staff area.
A while later Dr. Awesome returned and said the oncologist was concerned I had an infection causing the headache, which raised a concern of meningitis. The only way to test for that is with a lumbar puncture, but I didn’t have a fever or any of the other symptoms. Given that the doctors agreed that it wasn’t worth the risk of exposing my spinal column to additional germs or bacteria. Then it became apparent why we heard chuckling. Doctor awesome said he didn’t want to give me anything more to write about in my next blog post. However, the oncologist also recommended a flu test since it has been going around in our area.
The flu test consisted of the nurse tickling my brain with a q-tip in both nostrils. After that, my port was flushed, and Elaine watched intently to see to properly de-access a port. Then we were free to go, my headache was gone, and I had one hell of a ride under my belt.
After reviewing all the medications, I had taken before the headache, it was most likely not a reaction to the anti-nausea medications. So it was probably caused by dehydration, or it was a side effect from one of the chemo drugs. Hopefully, it was just dehydration, and it doesn’t happen after round 3.
The days following my ER visit, my head felt cloudy, and the neuropathy in my hands persisted longer than the first round. This side effect is cumulative so, it will likely worsen in severity and length each time. I just pray that it is not permanent. As I’m writing this, I’m feeling mostly healthy, but I notice that I tire more quickly than I did after the first round.
Dr. Awesome, if you read this, which I suspect you might, keep up the excellent work. Your bedside manner was fantastic. Hell, after I kick ass cancer to the curb, I’d love to grab a beer and a plate nachos and discuss blogging with you. Anything but hanging out in the ER with you again, no offense.
Lessons learned from round 2:
- Hydrate, hydrate, hydrate
- Reglan triggers Ben to Hulk Out
- Numbing cream is the bomb
- Chem’s like a box of chocolate, you never know what you’re gonna get
- Love can help you overcome any fear, even metropolitan rush hour
- Thrush sucks and so do mouth sores
I’m so proud of you for writing this blog so people can learn from your journey! Your writing is awesome!
I have heard many times that when someone is fighting the battle of beating Cancer (of any type) their attitude is key in the fight, well let me just say your attitude is amazing!!
I just want to say love can and will make you conquer a fear! Just know I will drive, walk, run, crawl anywhere we need to go help you through your fight you are my hero you’ve got this!! We will be right by your side though the fight!
Love you always
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Awww, thanks Mom, love you!!!
Well Ben! You never cease to amaze me. You explained everything so clearly I could almost picture it. Hang in there. There is no way on gods green earth that I can possibly understand what you are going through because I have never had to go through that. Thank you for taking us along on the ride. My thoughts and prayers are with you always.
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Congrats Ellen, you’ve officially been drafted for my cheerleading squad. 😉
Thank you for the continued prayers and support, it means more than you can imagine.
Ben, your writing is incredible. Taking the ride with you on this ass cancer journey is something I will never forget and to be able to experience all your tests etc. through your writing is a story itself. I can not imagine the pain or suffering you have gone through. To be able to write it the way you have is encouraging to know you can handle this beast. Prayers for you, Elaine, and Claire and Lexey every day. Hang in there big guy. All my love, aunt sue.
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Thanks, I’ve been a bit self-conscious about my writing thanks to chemo brain. I’m glad it is all still making sense 🙂
This quote sums up my thoughts on pain and suffering nicely:
“Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved.” -Helen Keller
Thank you for the continued prayers, love you!
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Ben You are amazing I wish I could have your strength to share this journey with all. We will be by your side all the way and there if you need us for anything. Your the best son-in law anyone could ask for.
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Thanks, Mom Goodman! I figure if I have to go through this rough stretch I may as well try to make something good out of it. Love you!
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