#6 Grim Reaper Greetings
Two days after my first treatment, I had another appt with Oncologist #1 and it wasn’t a good one. I left her appt feeling like it was a complete waste of time. I learned absolutely nothing new and when I questioned her about the 21 vs 28 day cycle, she was a bit combative and argumentative and made me feel like I shouldn’t be questioning her (even though she’s the one who initially told me it would be 28 days.) I left the office, sat down on a bench outside the lobby and just stared at the wall. I felt so frustrated and like she couldn’t give two-shits about me. Dave sat next to me, he was mostly quiet too. Is this really our new life?
I made a few phone calls that night to another Sanibel mom with more knowledge than me on local oncologists and she recommended I don’t hesitate to seek out a new one. She stressed it is an important time for me, and I should feel my oncologist is invested in me. It is common for adult cancer patients to not necessarily have a warm fuzzy relationship with their cancer doctor, but there are cancer doctors out there who go above and beyond. She recommended another doctor and I decided I’d no longer be subjecting myself to feeling the way I felt with Oncologist #1. It was time to finish my first cycle with her giving me two weeks to find a new cancer doctor and move on. This would be the last time I’d let her have the power to make me feel like I was just a number in the complex world of medicine. I get “warm fuzzies” from my family physician, so I know from experience there are countless good doctors and physician’s assistants out there, you just need to look until you find them.
The next day after my last visit with Oncologist #1, was treatment #2 (Cycle 1, Day 5.) After setting aside my stubborn independence that I carried with me to my first appt, and knowing I’d rather not experience a similar, frankly dangerous, drive home, my friend Becky offered to be my chauffeur. It was now Friday, March 28th. Becky and I walked in and the receptionist greeted us. She was in her early 20s, had dark hair streaked with turquoise dye and looked like she’d rather be anywhere else except sitting at an infusion center…..Ironically, I had similar sentiments. Becky and I sat in the lobby and she leaned over and whispered, “did you notice the receptionists T-shirt?” I shook my head no. “It has a picture of the grim reaper on it!” A look of dismay and disgust overtook her normally smiley face. I was like, “nooooo…. Really???” Who works at a cancer infusion center and wakes up thinking this is okay to wear to work? One would think she has boss who would prefer their cancer patients are greeted by absolutely anything else except an entity that is the personification of death. I shook my head in disbelief, how could she be that clueless.
Becky came back into the center with me as I found a chair to recline in, she grabbed a folding chair off the wall and sat down in front of me. It was pretty quiet in the infusion center, even though there were people around. I grabbed my phone and texted her, “I’m too young to be here.” She replied, “for sure” with a sad face emoji. I took a deep breath to relax and with the push of a button, let the chair raise my feet up. Becky slid my shoes off and offered to give me a foot massage, which she started before I really even got to answer if I wanted one or not. I’m glad she didn’t give me the chance to decline, wow did it feel amazing! We joked that Becky was setting the bar high for any of my future chemo companions and that a foot massage needs to be part of the deal!!
This treatment day was pretty easy compared to Tuesday. No bloodwork, no Benadryl, only one shot. I had Terri again and she checked my stomach from Tuesdays shots, one shot had left an inflamed red circle about the size of a lime, the other left an oval shaped purple “stain” about the size of a mango. Terri found a spot with no irritation and gave me injection #2 of Velcade. Becky and I were on our way out the door in an hour and hit up Cheesecake Factory for lunch where we shared the yummiest asparagus dish I’ve ever had in my life!!
Despite not getting Benadryl, I fell asleep in Becky’s car on the way home. I got home about 2:00 and crawled straight into bed to sleep some more. I woke up a few hours later at 5:00p profusely sweating and feeling incredibly drained, in fact, I was shivering. Oh no, did I have a fever? I grabbed a thermometer and it read 102.1. Chemotherapy patients are told multiple times, that if you ever get a fever over 100.4, you need to head to the ER immediately. Sepsis can form so quickly and can be so dangerous that they take zero chances and aggressively treat patients for infection. Dave and my mom were in Nashville with Maggie for a school choir trip, so I was home by myself with Genevieve and Robbie. I was in no condition to drive, so I called Dave’s mom and asked her to bring me to the hospital; she headed straight over. Not knowing how long I’d be in the ER, Dave’s dad picked up the other two kids and brought them to their house.
On the way to the ER we looked online at which hospitals had the least wait, ERs in Southwest Florida get very busy during snowbird season. The location with the least wait was a 45 minute drive, but the extra drive would be worth it. I was feeling worse and worse on the way there and my Apple Watch started dinging and buzzing notifying me that my heart rate was abnormally high. It was up to 125 bpm as I was just sitting there in the car and while I was delighted to see the heart monitor function on the apple watch worked, I started to get worried.
We got to the ER and Marykay dropped me off at the front door and then went to park the car. As I walked into the lobby I felt my legs start to buckle underneath me and my vision narrowed. I was starting to blackout. Luckily someone noticed and caught me before I fell on the floor. They brought me a wheelchair to sit in. Within minutes they had me in with the triage nurse who took my vitals and my heart rate was now up to 140, fever at 103, I don’t even know what my blood pressure was. They opened a curtain on the side of the triage room and immediately transferred me to a crash cart to lay down, ran an EKG which I failed, put in an IV line, took 6 vials of blood for labs and cultures and then told me I needed to provide a urine sample. A male nurse named Diego wheeled me to the bathroom and gave me privacy while I completed my duties, but then he came in to help me back into my wheelchair. I was immediately embarrassed about the smell in the bathroom and wished I hadn’t eaten so much asparagus for lunch…IYKYK. Diego wheeled me back to my mother-in-law in the lobby. A few minutes later someone else came to wheel me back to radiology for a chest X-ray. I didn’t even have to get out of my wheelchair for that, they took it as I sat in the chair which was pretty cool. They then returned me back to the lobby while we waited for a room to open in the ER. I was feeling nauseous and I started to bounce my knee up and down nervously and asked Marykay to find me a vomit bag. Luckily not long after that they brought me back to a room in the ER and immediately started administering fluids. Over the next five hours, they changed bag after bag on my IV and gave me, antibiotics, Tylenol, potassium, more fluids, I’m not sure what else. After about 3 hrs, my heart rate started to come down closer to 100 which was an improvement and my fever came down too. The ER doctor requested the nurse to come back in my room with the EKG machine to run that again since I did so poorly my first go round. This time I passed.
All the labs came back pretty normal except for low potassium and they couldn’t find any cause of the fever. Since I was feeling a bit better, they gave me the choice to either go home or be admitted to the hospital for the night. I chose to go home and spend what was left of the night at Chuck and Marykay’s house, I was incredibly grateful to have their help. It was 3am by the time I went to sleep. I was told to follow up with my Oncologist on Monday. Oh no, I had hoped I would never have to see her again. Uggh.
