Updated: Oct 19, 2018
So this has taken me a while to write, because I wanted to include everything in the process.
So chemo for me started with getting a port catheter in last Tuesday morning. This creates a direct line into my jugular so when I receive chemotherapy, the doctors and nurses do not have to connect an IV. My port is actually a double port, which allows two lines. The benefit of this is that I can receive continual chemotherapy in one line, and any other medications through the other. They can also do blood draws for labs.
At this point, my poor veins have been abused. I have a build-up of scar tissue inside each of my elbows right now, making many nurses at this point go through my hand. I don’t know if you’ve ever had a hand IV, but they are the WORST! Ug, you move your hand slightly, and you feel it completely. It also makes things complicated if you have to have the IV in for a longer period of time, with hand washing.
So in preparing for my port catheter, the nurse first tried my right hand, immediately missed the vein and caused a week-long bruise. She tried again in the left hand, this time made the vein, but again created a week-long bruise.
I went in for surgery for the port, which involved making an incision in my neck to pull my jugular down, and then creating a second incision to place and connect the port. Now at this point, I was still feeling pretty rough. The paracenteses from the Friday before that removed the 9lbs of fluid helped slightly, but I was still having a lot of pain and having trouble sleeping. Because of this, I was looking forward to my surgery nap! They told me I’d be in a twilight state, which for me usually puts me in a place of somewhat remembering, but just kind of napping. Well, that didn’t happen. To be clear, I was not in pain, and I did not feel any discomfort from the port placement at all, but I was completely awake the whole the time. The surgeon asked me to pick the music, and I requested classic rock. He then swore they selected a classic rock Spotify station, but classic rock was certainly not what played. We discussed how not only was it not classic rock, it sounded like muzak that we had never heard before.
When it was all said and done, I had the below placed.
How it works is what essentially looks like a large thumbtack that pierces the area where you see the dots below:
So I never got my nap, and at this point, I just have sedation kind of in me making me exhausted. My aunt and grandma took me for the procedure, and were able to secure me a wheelchair while we got lunch. The plan was to admit me after my port placement to get chemotherapy started right away. It didn’t quite work out like that. The original check in time was about 4:30, which eventually got pushed back until after 7. Gma and Karen had to head out to beat rush hour, so I set up in the waiting room and waited.
Then the fun began! Prior to receiving the chemotherapy, I needed to receive excess fluids and antibiotics, so that’s what we began with. Accessing my port (which felt great because it had JUST been placed), I was set up with two lines. Around 2am, they began my chemotherapy. As you know, chemo is poison. It’s the term we give to very dangerous substances that can cause a LOT of harm. Because of this, when setting up chemo, nurses, techs, and doctors must take extreme precautions.
For this round, I was given a cocktail of three drugs, which are given in two 24 hour cycles, hence the reason for being admitted.
So started my time at Chateau Hopkins. And when I say that, I don’t say that as an insult. I’ve had a lot of hospital stays in the last five months, and this was by far the most attentive and care filled visited. If I started beeping, someone was checking on me immediately. My nurses and doctors were nothing short of amazing. I had a lot of friends and family come visit and keep me company - as far as a hospital experience goes, it was top notch.
But it was still a hospital experience, and I was having a lot of pain at night. My stomach pain hadn’t subsided, and they were concerned I would already need another paracenteses (it turned out I did not). I did have more of an appetite there than I had had in weeks, which was a big deal.
Well, it was while it lasted. Then the nausea hit. I tried to stay active and walk around as much as possible, but the nausea was so very bad. The appetite I had soon vanished, and I was trying my damnedest to force down what I could.
I finished up chemo Friday at around 2am, and was discharged at noon. Prior to going home, I needed to first get a Neulasta patch. You may have seen commercials for this – it’s a patch that is put on you when you are discharged from chemo, and 27 hours later, it gives you a shot to boost your white blood cells.
Well, Friday and Saturday were actually pretty good. I was very tired, but it felt good to be home, and I was learning to balance what feels like hundreds of medications.
A lot of people have reached out. A lot of people have great stories of themselves or someone they know just feeling fatigued, or slightly nauseated once or twice. That has unfortunately NOT been my experience. Maybe it’s because I’ve always been prone to motion sickness, but the nausea came hard. And with that, I’ve not been able to build up my energy.
I had grand plans. I wrote myself out a list of things I wanted to accomplish this week. The one thing I did do ended up draining me beyond I’ve ever felt before.
So it’s not been good. My prayer is that the next round, being different drugs, don’t knock me out like this. I feel like I can’t remember what having energy feels like.
I’ve been so fortunate that my mom and husband have been here through all of this. It’s not just me not being unable to help them, I desperately need them at times. There are times were I cannot actually get up, and I have to rely on them to get me a drink, my meds, etc.
So this sucks. I’m a doer. That’s the word that could best be used to describe me. When I want something done, I just do it. I always have. And I literally cannot now.
Fingers crossed this weekend begins to look up.