Hell Week (Days 5-11)

Monday, June 3rd, 2024 – Day 5

Today was pretty miserable. I don’t even know how to explain it but my mouth is on fire, and it burns to swallow anything. I can’t eat so they decided to start me on tube feeding today. Thanks to my home team (Dr. Chau) for convincing me to get a feeding tube before I got here. Because of this, they’re able to feed me 1500 calories a day through a tube and I don’t need to get nutrition through an IV, which is way riskier. I still get to use my GI system which is the preferred method of getting nutrition because it is what is most natural.

Dr. Arnold (my transplanter) stopped by today and I told her I felt like death. I told her I feel like I got hit by a bus and then rolled over many times. I told her I don’t know how people do this if they are already really sick coming into the process. She reminded me that even though I didn’t “appear” that sick because I was walking, talking, functioning, that I was quite sick because I was on a LOT of immune suppression. Even though I felt okay for the time being, I wasn’t really okay. Dr. Arnold said that when she first received my medical records in December, she thought “Oh man, she’s REALLY not doing well” and was pleasantly surprised to see me doing “well” when she finally met me. To be honest, I had not been eating since November 2024 and had lost significant weight since. However, she had to remind herself that I had to be on so many medications to get to this point of “well.” Our visit today was short because I ended up passing out very shortly thereafter.

Tuesday June 4, 2024 – Day 6

The diarrhea really started full force for me. I also had blood in my urine this morning too.

My mouth is super swollen still and ulcerated, but the good news is the rash on my face has gotten better so I’m willing to take a win when I can.

I spiked a fever last night around midnight and this morning again so I had to get blood cultures done last night when I first got the fever. When taking blood cultures, they have to take it from two sites, and since my central line has three lumens, they were able to draw from two of the three lumens. As of tonight, I found out that one of the lines grew out Pseudomonas (the other one hasn’t grown anything yet), so they ended up taking a second set of blood cultures, meaning that I had to get poked on my arm again. They took a sample from that same line that grew out Pseudomonas and then did a peripheral line for the second source. It’s hard for my mind not to wander to all the possibilities of what can happen if these second set of cultures do/do not grow out anything – they obviously go scenarios like having to remove my central line and replacing it with another central line because I do in fact have a central line infection. But alas, Gordon says there’s no point in thinking about what ifs until it’s known …

My platelets are also at 12 today. Because of the fever and my low platelets, they also gave me a platelet transfusion today.

I really worked my nurses today; every channel on the IV was used at all hours of the day, with several Y-sited on to accommodate more medications.

Wednesday, June 5 to Sunday, June 9 – Days 7 to 11

I really don’t remember the rest of this past week. All I can say is that I’d never wish this experience on my worst enemy. Even being a pharmacist, working in oncology, being in the periphery of the hematology space, I knew what was going to happen, but nothing can prepare you for what you are actually going to experience when it does happen.

The mucositis in my mouth is far more painful than I could have imagined. I’ll spare you all the pictures of my mouth. I haven’t eaten since June 3rd by mouth. I can’t swallow anything because it is so painful. I can’t talk because it is so painful. I can barely open my mouth because my cheeks are so swollen and inflamed. I’m on a fentanyl PCA (patient controlled analgesia) pump which basically allows me to press a button that gives me pain medications when I want it. I’m also on a basal amount of fentanyl meaning a steady amount of fentanyl is going in me all the time, with the button used when I need an extra bump of meds. This has caused me to be very sleepy and loopy and non-functional.

Unfortunately, mucositis isn’t only contained to my mouth. Any and all mucous membranes that I have were affected – everything along my GI tract all the way to the rectum, my vulva, my eyes. It all feels so unbearable. My eyes feel so dry and crusty, and the skin around my eyes are so tender.

I also spiked another fever at some point this week which led them to add more antibiotics, the whole kitchen sink – vancomycin, avibactam/ceftazidime, and metronidazole. However, by the end of the week, nothing else had grown out of the second and third set of blood cultures so they readjusted the antibiotics to just be meropenem, a broad coverage antibiotic.

Nausea also has been problematic for me. The worst part is that I don’t get much of a warning when I’m going to vomit. Because of the general discomfort of mucositis, feeling drowsy, getting tube feeds, being poked and prodded, it’s a little challenging to discern what’s nausea versus just feeling crummy so when it happens, it happens without any warning. I’m on scheduled zofran, compazine, and olanzapine because of the nausea so it’s a lot of medications to help mitigate it.

My platelets are also still really low (less than 20; normal platelets are above 150) so I’ve been getting platelet transfusions almost everyday. I’m having some bleeding in my mouth and throat from my oral ulcers so the threshold for platelet transfusions is anything under 20. I have small bruises all over my body for no reason. Even scratching myself can leave these little petechiae marks on my skin.

My hair also started falling out, but not in a cute way. I look like a little chia pet. I almost wish that all the hair would fall out all at one time but no, there are random patches here and there and it’s all over my bed and pillow. I guess with time, it’ll all go away.

I’m sure there’s more to this horrible experience that I can’t remember now. Brain fog from chemotherapy is a real thing – I feel like I can’t remember or concentrate much on anything anymore. Staying awake is hard.

Things were so busy that I was assigned a 1:1 nurse this whole week because of how much care I needed.

In any case, I’m so glad this week is over. No counts yet but hoping they’re coming soon. I tell them “go little rockstar” every night before I go to bed. It’s been nice too that my mom has slept over at the hospital with me this whole week helping me go to the bathroom and all the things. But I do know that my mom is exhausted even though she’s telling me she’s fine (can you tell where I get this personality trait from?)