The first chemo cycle was a completely new experience filled with many unknowns. The unknowns definitely added to my anxiety. This second cycle had far fewer unknowns and the anxiety levels have been significantly lower. In fact, it felt a lot more like settling into a routine.
There were a couple of changes.
I tolerated the Rituxan infusions so well, I graduated to the injection. Instead of an infusion that takes 3 hours, the injection takes 5 minutes and they watch you for 15 minutes afterwards. Yes, the injection is a slow injection and takes 5 full minutes to complete. And it is given in the stomach. I was apprehensive about this because it sounds terrible. It wasn’t bad. It didn’t hurt as much as I expected and it was really fast.
My doctor changed the chemo protocol slightly. Instead of each chemo bag running 24 hours with no breaks between, she ordered that each bag run 20 hours with a 2 hour break between. This had 2 noticeable impacts. First, I had a 2 hour window when I was completely disconnected from the IV. You guessed it…this is when I took my shower and I did get to take showers everyday. I know it is a little thing, but that helped immensely. I also used that time to do yoga. My room in the hospital is very large but mostly empty and there is plenty of floor space for a yoga mat. The nurses loved that I brought my yoga mat and did yoga in my room. The second impact is that my chemo treatment finishes faster and I get to go home sooner. Instead of going home at 8:00 at night I got to go home at noon. The protocol change did cause a bit of confusion for some of the nurses and the pharmacy, but everyone seemed to figure it out.
Another change was to one of my medications. I have been taking a very low dose of xarelto to prevent clots. The very large tumor in my chest should be coming apart and that by itself is a clot risk so a blood thinner helps prevent that. This time in the hospital my doctor changed the pill blood thinner to an injection (lovenox). This is where I should have learned…ask more questions up front. I made the assumption that an injection would go into the IV line (several other do). No. The first time the nurse asked me where I wanted it and told me the IV line was not an option. I could have it in the arm, stomach, or thigh. Not knowing better, I said arm. Big mistake. This is one that goes into fatty tissue and my arm does not have very much of that. OUCH! I learned. The remaining injections (I got one per day) were in the stomach where I have plenty of squishy. Those were not so bad.
And then there was the settling into the hospital routine.
Mornings start early anywhere between 4:00 and 5:00 am with the night nurses sneaking in to get vitals (yes, all my night nurses were very kind and tried not to wake me up), and draw blood for the days blood work. They can take blood through my PICC line so it is easy for me.
Sometimes I go back to sleep, sometimes I sit up and start my day – check email, study Spanish (I have been working on learning Spanish using DuoLingo), read, etc.
Breakfast arrives anywhere between 8:00 and 9:00 am. You start to learn the sound of the food carts in the hallways and know food is on the way. I am on a regular diet because other than the cancer I am healthy. This means I get coffee and bacon with my breakfast. Everything is better with bacon.
Breakfast is followed by the morning medications – a fistful of pills.
Shortly after breakfast is rounds. This is when the doctor on call visits all the patients, examines them, makes sure they are doing ok, and makes any adjustments to treatment that might be necessary. I call this the parade. It is never just the doctor. It is the doctor and a assortment of medical students, social workers, pharmacy residents, nurses. I get to ask questions too. I want to understand both my disease and my treatment so I ask questions. I am not sure the doctor was prepared for my kind of questions because I ask more informed and complicated questions that he seems used to. I do so without apology and I think he is getting used to it.
After rounds and breakfast I go for a walk around the floor. I am supposed to get some exercise. I am restricted to the hospital floor I am on. It is not very big. When I go for walks (me and my IV pole) it is really just circles. But the nurses are happy and they put it in my chart.
The rest of the morning I work. I log in, answer emails, attend meetings, do work that needs to be done. It is very cool that I can work from anywhere, including the hospital. Honestly, this has been a sanity saver.
Lunch arrives around noon. One of the best things about being on a regular diet is that I can eat anything. This means that friends can bring me food from the outside so I get yummy food and visits with my favorite people. This is the best.
Afternoons are much like mornings, work, meetings, and because I am actually sick and all the medications (including the chemo) take a toll, I sometimes nap.
Dinner arrives between 4:30 and 6:00 pm. While the food is not gourmet, it also isn’t bad. Again, because I get the regular diet my food has flavor.
About every 4 hours throughout the day and night nurses come to check my vitals and make sure I am still doing ok.
The evening is when I get to spend time with my favorite visitor – my husband. He comes to visit after work and stays for several hours. He pulls the comfy chair over next to my bed and we watch YouTube sailing videos and chat about work and life and events of the day. It is my favorite part of the day.
Once my husband goes home, I settle in for the night.
There are other parts of the routine that I really like. I get texts from my mom, my sister, and my daughter. I even get to FaceTime with my daughter and granddaughter which is always fun. These parts of the routine are scattered through the day and are nice diversions from the monotony.
I had two special treats during this hospital stay. The first was a visit from my team. They came to see me and bring me my Chinese New Year gift. For background, my team is part of a larger team located in both Florida and Singapore. The leadership team (which I am a part of) decided to give each member of the team a traditional Chinese New Year gift – a red packet or envelop with a small amount of cash and 2 oranges. It was a wonderful surprise and it made my day!
My second treat was a visit from good friends who brought me lunch (yes a burger from the outside!) and visited with me the entire afternoon. It was so nice to have a wide ranging conversation about anything and everything.
And that is life in the hospital. Currently I am not in any pain or discomfort. The chemo is not making me feel bad while I am receiving it. So really, days in the hospital are just long and boring so I do my best to fill them with activity to keep me from being too bored.
And now I am 1/3 of the way through the chemo treatments. Two down, four to go.