Finishing up Cycle 1

I start Cycle 2 tomorrow; so let’s see if I can finish writing about Cycle 1 in this post.

Recap: I finished my Cycle 1 chemo and underwent a procedure in interventional radiology to remove a blood clot. Drugged up and loopy, I was wheeled into the Special Clinical Studies wing of the hospital (there were no available beds in the oncology area).

This is where the story gets interesting.

The Special Studies wing was originally built in preparation for an Ebola outbreak. We passed through multiple double doors into a hallway with rooms monitored for negative air pressure lining the left wall. To the right was a large room with a big screen TV, gaming console, and snack bar. The nurses’ station was centrally located in a plastic enclosed unit. Beside each hospital door, pictures were painted directly onto the wall (in case of psychotic episodes?). I was wheeled into one of the first rooms.

The room had two beds, but thankfully I would be the sole occupant for the night. I chose the bed by the window. Exhausted, I just wanted to go to sleep—it was only noon. Instead, I met my nurses and ordered lunch since I hadn’t eaten yet that day. Jason and my mom wouldn’t be able to spend the night, and I tried to enjoy the company while I had it.

During my entire first cycle, my night in the hospital was by far my worst (and that includes some fun stuff you’ll read about in a few minutes). My family went home, and I was left scared and alone in a pressure sealed room with pictures painted on the wall. I had a tube going into my left arm with a heparin drip, which was keeping my blood super thin, and a tube going into my right neck with a saline drip. The tubes all attached to a machine that was making a clicking sound every few seconds as the liquids were pumped into my body. On top of everything, I was on a major steroid crash from being taken off massive doses of Prednisone (part of the 5-day chemo treatment), amplifying everything I was feeling. AND, the saline drip made me pee every hour, eliminating any possibility of sleep.

I feel like I’m writing a script for a hospital-themed horror movie.

I can’t even begin to describe how relieved I was to see Jason in the morning. I wasn’t much for conversation by that point; it was just nice having him in the room.

Around 8am, I was taken back to Dr. Chang for an assessment of my blood clot. Right off the bat, he saw that the direction of blood flow had returned to normal and that some of the clot had already dissolved. He applied a bit more enzyme and stretched my jugular again with the balloon. This time around, the drugs made me feel like I was the size of an ant and that my neck was on the other side of the room with my doctors. It was bizarre. It made the morning much more entertaining at least.

As they wheeled me back to my hospital room, Jason literally broke down in tears. The nurse thought he was just joking around, but he wasn’t. When Dr. Chang had finished, he had explained to Jason that the procedure looked like it was working and that my blood flow was returning to normal. I can only imagine how Jason felt. This whole time, feeling so helpless and out of control, it must have been such a relief to hear good news. I mean it when I say that I’d rather be in my shoes than his…

I was only in the hospital a few more hours when Dr. Chang decided I could go home. He came to my room and removed all of my tubes (YAY!!!!!!!), and I was discharged.

It’s amazing how quickly the human mind and body can just move on. Within days, I was feeling pretty normal. I did end up going neutropenic around the tenth or eleventh day of my first cycle (neutropenic is when your white blood cell count drops to a point that puts you at severe risk of infection), but with frequent naps I was able to handle the fatigue pretty well.

What I did not handle so well was the side effect of the Neupogen shot. I briefly mentioned it earlier, but Neupogen is a drug that helps bone marrow rapidly produce new cells. In young people with healthy bone marrow, this can be a painful process. On the night of Monday, March 12, I found myself literally screaming into my pillow from the pain in my hips and lower back (pelvic bones). We called the hospital, but they didn’t want me to go to the ER since I was neutropenic (who knows what I’d pick up at the ER), and I couldn’t take any painkillers since they could mask a fever. So, they told me to get in a warm bath and take Benedryl to knock myself out.

Water is amazing. I literally went from screaming in pain to being relatively relaxed in the course of ten minutes. The warm water decreased the pain level to a point where the Benedryl could knock me out. I slept. I now have a nice little prescription for a narcotic in case it happens again. Hmm, I just realized that it’s a drug to manage the side effect of a drug that’s being used to manage the side effect of another drug. Wow.

But wait, there’s more! Only a few days before all of the bone pain happened, my poor Mom and Jason both came down with what we thought was food poisoning. Then, when my sister flew into town Monday night (the same night as my bone pain), she started showing food poisoning symptoms a few days later. Coincidence? Nope. They all had norovirus. How do I know? Because on Saturday night, March 24, I started puking my guts out and, well, it would be TMI if I said any more.

Back to the hospital on Sunday! I was given a liter of IV fluids and a hefty course of antibiotics. On Monday, I returned to the hospital for another liter of IV fluids. After they ran a few tests, it was determined that I had a double duty infection: norovirus and C-Diff (a bacteria that can be in a healthy person's system, but can get out of control in immuno-compromised people, like me).

So there you have it. That was my Cycle 1. There were a few good days spattered here and there, and I treasured every single one of them. Today was a good day! My mom and I even went to see a movie (The Vow). My hair is starting to fall out, which sucks, but I’m sure I’ll be talking about that soon—we’ll see if I get the guts to post some pics.

I want to end this long, and sometimes depressing, post on a happy note. All of the words and actions of love, encouragement, and support have helped SO much. There have been moments when I’m feeling pretty damn down, and then the phone rings, and it’s a friend who called just at the right time to pick me up. Or a package is delivered to the door and it’s something that I didn’t even realize I would need. Or a card comes in the mail with just the right words. I have cried more happy tears than sad during all of this. THANK YOU from the bottom of my heart. Thank you.