Pretty much the first thing that anyone says after seeing me for the first time is “Hey you still have your eyebrows!” Not really sure why that’s the first thing that comes to their minds but yup, I still have them. I don’t really know what logic my body’s decided to follow on keeping or dumping hair, but lately my head’s been losing more small bits of the hair I buzzed a few weeks ago and it’s been really itchy the last two days. Maybe I should just shave it clean?
We got to Mayo right on time for my 12:15 PICC line dressing. Every 7 days, they need to change the bandages surrounding the tube on my left arm to avoid infection because it’s literally sticking out of my body for several months. The procedure takes about 15-20 min. The nice thing I like about this part of thie hospital is that I always get a window and a nice view.
Everyone in the room has to wear masks during the cleaning, the nurse takes off the adhesive, puts alcohol on my arm, and then replaces the adhesive.
It was super weird when I slightly moved my arm and the tube slid in and out of my arm. I asked the nurse why I didn’t feel it or why it didn’t hurt. She said I should just be happy that it’s not causing me issue because it just means that the nurse that installed it did a really good job.
After this I had to get my blood tests. This was the first time they took blood from my PICC line and it was SO nice not being poked for it. They took two giant vials of blood from me. I told the nurse that since it was so easy for them, feel free to take more.
I can’t start chemo until the results have been reviewed by the staff. For some reason today, the lab must have gotten backed up because my test results took a while to come back. There’s a lounge in the cancer center for patients and their families to eat snacks while they’re getting treatment. I wandered over to see what I could snack on.
Nobody needs this many rice krispie bars…
The test results came back and as a reminder, my white blood cell count was at 3.91 last Monday when they tested it before I started my week long chemo stint. The expectation was that it would fall but since I did the Neulasta shot, the numbers should have gone up to protect my body. The test results showed 17.06 which is crazy. Normal maximum for people is 6.45 which means that at this point I’m basically Superman and practically invincible. Come at me germs.
The booster shot was quick and only took half an hour to administer. We did get a surprise visit by Dr. Costello while I was getting chemo. He said that I was doing much better than the first round of chemo and that my Neutrophil numbers looked great after being on the Neulasta. He did confirm that I will be doing another shot of it during my 3rd round of chemo which I’m not looking forward to.
Considering my immune system was looking so good, I asked if I could go out in public and see a movie in a theater with people around me. He laughed and said yes I can go see a movie. I asked if he could write it in a prescription just in case my dad wanted to contest it.
Immediately after I finished chemo, I messaged Joanna and my friend Jack if they wanted to go see Ant Man 2 after I got home from Mayo since I didn’t want to miss out on the opportunity. The movie was at 8pm and I got home around 5:45.
As we were getting into our neighborhood I noticed the joints in my hands were getting achy…eh oh
I got into the house and my energy levels were noticeably starting to slow down and I started feeling cold too. This only meant one thing so I quickly grabbed the thermometer.
I seriously can’t catch a break.
Had to call everyone and cancel our plans for the night. I crawled into bed and popped two Tylenol with the hopes my fever would go down. If not, I’d have to go to the ER and let them figure me out.
Thankfully it took about two hours for my temperature to go down but I was still disappointed I didn’t get to go out like I wanted to. Dad lectured me that the doctor will say anything because he’s not the one that needs to take care of me in case I get sick. He just issues the treatment plan and writes prescriptions. My parents are the ones that have to deal with me so I should just stop fighting and arguing wanting to do what I used to do and just focus on getting better.
I know I’ve talked about this before but being constantly reminded by my parents I can’t do X because my body needs rest or looking at myself in the mirror and being reminded that my hair is gone is tough some days just because it’s a reminder of what I’m going through and what I can’t do on my own. It’s also tough not having a solid date of knowing when I can shed all of this and work on getting back to my normal routine.
While I’m extremely grateful of both of my parents, especially my dad taking care of me when I can’t take care of myself, it’s really hard living at home again at 30 when I’ve been on my own for 10 years. I’m not allowed to wash my own clothes because they’re toxic and need to be washed outside of the house. I can’t wash my own dishes either because I could “contaminate the other dishes”.
Offhand comments like “How come you’re not sleeping yet?” or “Aren’t you going to eat dinner?” just make me feel like I have a set bedtime are annoying. My parents believe that my neutrophil numbers are a result of drinking the bone broth soup every day which means that I will continue being given bone broth soup every day until I’m done with treatment.
Jesus answered, “It is written: ‘man shall not live on bread alone…” Matthew 4:4
I think Jesus would also agree with me that Man shall not live on bone broth soup alone either.
My desperation has gotten to the point where last night, I waited for my mom to go to bed before I snuck into the kitchen to make…*ghasp*….a salad!!! I made a simple honey mustard vinaigrette which I drizzled over roma tomato and lettuce topped with some parmesan cheese and cracked pepper. I ate it in the kitchen closet.
When dad took me to the grocery store the other day, I hid a bag of green leaf lettuce under some other groceries when I was checking out.
While living with their parents, kids will sneak out to parties. I sneak into the kitchen to make and eat a salad…
I just have a general sense that my independence has been robbed since I can’t live by myself during treatment and being told to “rest” every day makes me feel generally impotent because all I’m doing is waiting.
Ok I think I’m done complaining now. I’m sure in the grand scheme of things, this 6 months or 8 months of time is going to seem small. Right now, being in the middle of it, it feels never ending when I’m cooped up at home, in a hotel, or in a hospital.
