Done with Cycle 3
Wow that was a bad week. My chemo week for round 2 went so well, I just expected they would all go like that. Nope. Day 1 was okay - you don’t really start to feel the effects for a few days. The trouble started on Tuesday as my mom was driving me back to the hospital to get my next bag hooked up. All of a sudden on the freeway, 23 hours into my first 24 hour bag, it stopped. The pump beeped at me and gave an alert that it detected air in the line, and then it shut itself off. This was my fear after going through the first infusion in the hospital and seeing how often my IV would beep at me and the nurses would have to come and fix the bubbles in the line and turn it back on. I still have nightmares about that annoying beeping. Of course when the pump turns off all that I could think was about how much longer I would have to be attached to the bag. I would have rather the pump go twice as fast getting the whole awfulness over sooner - but this was just going to delay me feeling better. When I arrived at my appointment they were able to get the pump started again, but I was now going to be stressing for the next 4 days about if and when it would happen again. They assured me that this doesn’t often happen with the pumps and I let them know that I didn’t have any issues with the pump during my last round - so hopefully there was no reason to worry. Wrong. Wednesday morning at about 3:30 am I was awakened by the same beeping. Again with the error about air in the line. I opened up the bag and made sure there was no kink in the line and attempted to restart the pump. It wouldn’t allow me to restart the pump without entering the 3 digit code. Well crap! I grabbed my stacks and stacks of paperwork and found the emergency numbers I was given. There was one for the chemo clinic - but of course they’re not open in the middle of the night and this couldn’t wait till 8 am. I called the after hours nurse line and I could tell they had no way to help me. They don’t have access to the code and had nothing to suggest other than going to the ER. I immediately broke down in tears after my last experience in the ER. I’m not safe around sick people - I have no immune system - I could die if I get COVID. But I had no choice, so I went - driving myself to the ER at 4 am. I was really hoping they would be able to get the code, restart it, and send me on my way - Surely they would have the code. Nope. It quickly became clear that the ER has no protocol for dealing with chemo pump patients. Of course, it also may be true that I’m the only chemo pump patient currently at Kaiser. I was told before I began my “Chemo at Home” experience that this was how more and more patients were getting chemo because of COVID. How was it possible that nobody knew who to get the code from or how to work the pumps? The ER nurses started calling other departments within the hospital while the doctor starting making calls to the distribution company for the pump to try to get the code. The nurse kept coming back in telling me to try different codes - 811, 080, 118 - nothing worked. I could tell the doctor felt really bad they couldn’t figure it out - clearly this is an issue and I really hope because of my experience that something changes. I ended up taking everything out of the bag and spreading out the tubes and flicking out the bubbles and I just kept trying to press buttons and restart it. Finally after about 2 hours in the ER I was able to get it back on. I was upset, they felt bad, and then I went home.
Sleep deprivation is a real thing and since my kids are no longer waking every few hours, I had forgotten just how terrible it is. During the week of chemo, in addition to the bag-o-poison, I also have to take 5 Prednisone pills (steroids) - and these make it really difficult to fall asleep. My sleep pattern for chemo week involves me down on the couch (typically watching something true crime or listening to podcasts) until I fall asleep sometime around midnight, then when Eric wakes up at 4 (or earlier) I’ll go upstairs and crawl into bed for a few hours. This is partly because I can’t get comfortable attached to the bag, the whooshing sounds of the pump, my restlessness, but mostly I’m trying my best to make this situation more comfortable for Eric. He’s a really light sleeper and has to be up so early, it’s just not fair that I make it harder for him to get a good night sleep. So now it’s Wednesday morning, I’ve had about 3 hours of sleep and I’m now returning home from the ER at 6 am knowing I’ll have to return to the chemo center at noon for my daily appointment to get my new bag - Only now we’re adding the stress that this is going to be a constant problem as it’s now been 2 days in a row with pump errors, and I’m trying to do the math on how long my pump had been stopped to know how many hours I’m now delayed. The whole thing was a mess and I was exhausted.
I showed up for my appointment with more than 3 hours remaining due to the delay from the ER so I was hoping they could speed it up so I didn’t have to be there all afternoon. It was an overly busy day in the infusion center, so they had me in a little exam room as opposed to the recliners out in the open that I’m used to. I let them know all of the issues I’ve had and how my pump has stopped 2 days in a row and how nobody in the ER knew how to restart it. I spoke to the case manager as well suggesting that they put the code in my chart or have that info accessible to the ER staff - of course they won’t give it to me. The case manager said that there is a process in place and the ER staff just needed to call the oncology pharmacist for the code and they should have known that. I don’t know where the miscommunication is, but I certainly hope they can fix that. Upon my insistence, she was able to add the code to my chart so if anyone looks there they would have it - that seems like a good plan, but still would mean I would have to go to the ER in the middle of the night if it happens again. I was there in the exam room for about 2 hours on Wednesday making up for my lost time and as I was leaving, it occurred to me that my nurse that day never once took my blood pressure or temperature (something they usually do every 30 minutes) and he also failed to replace the batteries in my pump (something they’re required to do each day). Now I’m not going to say women are better nurses, so I’ll just stop there.
I went home with more added nervousness and sure enough, at 5 am Thursday morning , the pump stopped again. Desperate to avoid the ER, I took everything out of the bag, laid it all out, pinched the air bubbles, and continued to try to manually restart it. This time it only took about 40 minutes to get it to start back up again. So again I went into my afternoon appointment at the infusion center with a severe lack of sleep and overwhelming frustration. Again they said it wasn’t the pump and tried to rearrange the contents of the bag to hopefully avoid the issue for the next day. Friday morning at 6 am the pump stopped again. This time, I kept calm, and did as I had done the day before - took out the bag, pump, and tubes and spread them all out. It seems like the pump may be overly sensitive to the bubbles, but luckily once the bubbles go away and the bag is still for 30 or so minutes, it’s able to get going again. So for those of you keeping track - 4 Red Devil Bags - and the pump stopped with each one. By Friday I was so mentally and physically exhausted and just ready to be done with this round. Eric took me to the hospital for my last appointment where I had to finish with my last red bag and then get the 1 hour bag that book-ended my infusion. Last, all I had to do was stop by the pharmacy to get my Neulasta shots to keep my white blood count up on my way out. 1 hour later I emerged from the hospital in tears. The pharmacy at the hospital didn’t have any of the shots - how could this be? - the prescription was put in on Monday! They called several other Kaiser pharmacies and they were all out too. I cried (loudly) in front of a busy pharmacy. I think I said something like, “I’m going to die if I don’t get those shots”. I know that seems dramatic, but it could really be true. If my white blood cells drop to zero because I don’t have those shots and I get even a low fever or mild cold, my body won’t be able to fight. After about 30 minutes and my very embarrassing freak-out, the nurse called up to the oncology floor of the hospital and asked if she could borrow some shots from them. Done - it was that easy. I don’t know why she didn’t think to ask them sooner, but oh well - moral of the story - crying and emotional outburst in a public place yields prompt results. I hate to say it, but I’m starting to lose some love for Kaiser after this week.
We rushed home so I could finally take a shower after being attached to the bag for 5 days and get ready for our fun night out with the kids. We knew when we bought tickets for the drive-in concert at The Grove in Anaheim for my last day of chemo that there was a chance we wouldn’t be able to make it, so we didn’t tell the kids. My mom and stepdad brought the kids home shortly after we returned from the hospital and we got to surprise them with the news. They were so excited just to get to be going out and doing something (and so was I). It was a great night. It felt so nice to spend a warm summer evening outside with some much-loved live music. Anyone who knows me knows how much I love concerts. It’s something Eric and I spend all of our date nights and even some vacations doing. It’s been 7 months since we had been to a show, which seems insane since we usually go to a show or two a month. So many concerts we had tickets to got cancelled or postponed because of COVID and I certainly hope that once I’m better and the world is safe we can resume our beloved concert-going lifestyle. I’m so grateful that I was feeling well enough to go - aside from being extremely tired.
Now the post chemo side effect cycle will start over and I’ll start to feel the nausea, bone pain, and body aches return. I certainly hope I can avoid some of the setbacks that I had with the last round - please no more fever and chills. I feel like I have a handle on the low potassium now, so it’s just going to be a struggle to keep my white count up. I’ve now gotten through the first few days post-chemo and I hope I’m almost out of the woods. There certainly is a lot of unpleasantness that goes on in your body after pumping 100+ hours of poison in and most has to do with your digestive system. I’m taking this much more seriously this time after dealing with a lot of painful issues last round. Bland food, nothing spicy, no red meat, avoid fatty food or anything deep fried. What sounds the best in the days after chemo are things like ice cream, cold fresh fruit, smoothies, yogurt, cereal with milk. These are also the days where my Diet Cokes don’t taste right - this part is such a bummer. This has become my gauge on where I am in the recovery - how does Diet Coke taste today? Still sour? Try again tomorrow. It’s now Tuesday and I can tell that tomorrow will be when their full flavor will return - I’m pretty excited.
Tomorrow is also the FIRST DAY OF SCHOOL! I can’t believe I have a 4th grader and a kindergartner. Thanks to my mom for helping with their room - we now have a nice place for them to work. They have color coded and organized bins and are all ready to go with their zoom logins (that we tested tonight just to be sure there’s no glitch). It’s going to be a very different year for sure and I’m hoping I will be well enough to help the kids as much as I can. I’m looking forward to getting some more structure back in our lives - it has been such a weird summer which began with my diagnosis. Our whole world has changed since the start of the summer and it won’t ever go back to what it was. It’s hard to even remember what life was like before - back when we had to commute to jobs and the kids were getting dropped off at school at 6:30 am everyday. I feel like I know my kids a lot more now, but we’re all getting tired of being on top of each other all the time. Wish us luck.
