Here we go again..(Post #6)

Welcome back, I'm glad you're here!

In my last post, I talked a bit about my return to chemotherapy in 2025 as well as dealing with the new condition of hydronephrosis on my left kidney. In late January 2025, a urethral stent was placed, which I removed per instruction four days later. This post continues from that removal.

A few days after removing the stent, I began to have pain during urination, more frequent urination, and a other common UTI symptoms. I also began to have flank pain, and we headed to the local ER for treatment. Upon arrival they ran labwork and performed a CT. While my kidney labs had come back normal, the CT showed that there was still hydronephrosis and hydroureter on my left kidney. They held me overnight to place a nephrostomy tube, a tube that starts at my kidney, exits my body in my left midback, and releases the flow of urine into a bag. It is very similar to have a urinary catheter except for the placement of the tip. I was correct that I had gotten a UTI with the internal stent, and antibiotics were ordered. They also started me on Vancomycin, and quickly I began to feel flushed, itchy, and lightheaded - typical signs of a somewhat common reaction to Vancomycin, red man syndrome. They stopped the infusion, gave me medicine for allergic reactions, and later gave me a different antibiotic. It was a bit of a frustrating experience for a few reasons, but a large reason was that I was still physically in the ER, although they had already transferred me in the system to care under a medical floor. This can happen in hospitals for a variety of reasons, sometimes it is because there is quite literally not an empty (or perhaps I should say clean and empty) bed/room, but another common reason can be that there is not enough staff on the transferring floor to safely transfer the patient at that time. Sometimes they will call in another nurse, or another patient will be appropriately moved, or it can wait until the next shift which might have more people. I try to be empathetic as I understand how these situations can happen, but it had an unfortunate result for me. A huge effect from this was that given my condition I was peeing extremely frequently, and I unfortunately wasn't having much advance notice to when I needed to go, and the only two bathrooms in walking distance were a little bit down the hall on either side. I thought that radiation damage done to my intestines was bad and the worst of it, but these issues were a close second for sure. I don't think any adult is ready for having bathroom accidents, but there's certainly a new level of shame I experienced as a 40 year old when you're nearly helpless in controlling your bathroom habits.

The next day I was taken to IR (interventional radiology) and a nephrostomy tube was placed inside my left kidney. The procedure was quick, and while I was awake I was given some numbing medication as well as some anxiety medication. I remember still nearly having a panic attack in the room while they were performing the procedure, but the medicine kicked in a little bit after and I slept when I got back to my room for a few hours. We went home later that night, and learning to live with the nephrostomy bag has been a frustrating experience. I tried using the straps to put it on my leg, not only was it uncomfortable but I felt that as soon as there was any amount of urine in the bag it weighed it down enough to pull at the straps. Additionally, I rarely go out, and the most comfortable thing for me to wear has been sweatpants, which worked in my favor for the bag because it doesn't fit well inside the jeans or other type of bottoms. I spend a lot of time sitting in a chair or my bed with my legs up, and I found that it was somewhat easier for me to lay the beg next to me on the bed, or on the floor if I'm sitting in the chair and then pop it in a pocket or such when walking around. I had happened to purchase a nursing hip bag shortly before, and on occasion when I have needed to go out it has been handy for me to place the bag in that, although because of gravity it doesn't drain into it when I have had to utilize the bag for longer periods of time. No matter where it seems to be, it gets tugged from time to time. The most difficulty comes when laying down or sleeping. It's become pretty much impossible to lay on the left side, and I have to coordinate where the bag is when moving around in bed. Sometimes I've been able to utilize scrub bottoms which has a larger and lower pocket on the side, and I can move around a bit more freely without needing to move the bag. A few times it has slid open during sleep, which is another fun way you can wet the bed at 40!

The following week I went see my urologist for a followup about the internal stent. I showed him my bag, which had been added at a different hospital system. We discussed the bag and other options that might be available to me. Obviously I wasn't a huge fan of the bag and the logistical issues that arise, but I was also worried about the risk of infection, especially while being in chemotherapy that would lower my ability to fight infections. He said that there was an option for a completely internal stent, which if that worked, would allow me to rid myself of the nephrostomy bag. Nephrostomy bags have to be completely changed surgically every few months, but an internal stent could be changed twice a year. Therefore we decided to switch the bag to an internal stent, and his office would call to set up a surgery time.

The following day was my regularly scheduled chemotherapy visit. Everything was going normally until the end of the day, when my carboplatin began infusing. I immediately started feeling unwell. I felt nauseated, flushed, and like there was a "hollow" in the center of my chest. The nurses immediately stopped the infusion, gave me the required reaction medications as well as fluids. It was a rapid improvement, and I learned from the doctor and nurses that carboplatin is a cumulative drug, and there is a limit - but it varies from person to person, as can the reaction. They all said it made complete sense as it was my 8th dose of the medication. It was added to my list of allergies, which had one item since my 20s and now had 5! They monitored me for extra time, and when they and I both felt I was back to my normal self we headed home.

I had a bad feeling in my stomach that day. If this wasn't working, would it continue down this path of failed drugs? I felt like the reactions could possibly increase. Additionally, I vaguely remembered the recommended treatment plans, and I was running through them. I knew that an option before had been Tivdak, which had varying levels of side effects involving the eyes. I couldn't remember the other drug options that were listed after the ones I had been on and it was a weekend, so I wouldn't know more at the moment. All this together, I wasn't sure how much time I have left, or at least time without side effects to my vision. My daughter had recently had her second child, and I went home after my appointment and bought a ticket to see her in a few weeks. It was truly a deal, financially speaking, and an amazing opportunity that I was able to visit them and meet my new grandson. That brings right up to mid February, and I will continue from there in the next post.

This one took a while for me to get out, it was a lot, in every way that can be meant. There are probably huge grammatical errors, and I apologize, but living it was enough, writing it was hard, rereading it was...nearly impossible, but I tried. Thank you all for your support during this time in my life.

Thank you for reading to the end of this post and I'll see you soon!