Treatment day starts with a visit to the lab, which is on the first floor of the cancer center. They draw a few tubes of my blood from my arm and send me on my way to the elevator. Some days I go to the fourth floor to see my oncologist. Other treatment days I go straight to the infusion center on the fifth floor. In either case, at some point I find myself in the waiting room on the fifth floor, wrist band on my arm, looking out across the parking lot with my mind wondering about what else is happening in the world.
Inevitably, this daydreaming is interrupted with the sound of my name being called by the medical assistant. It’s time to walk through the door into the infusion center. After a quick stop at the scale to make sure my weight isn’t dropping (it isn’t), it’s off to my room for the day. The medical assistant checks my temperature and blood pressure and then leaves me alone in the room with Meghann. I chat idly with her, trying to suppress the nervous feeling that starts to bubble up. I stare blankly at the IV pump that will become my companion for the day, filling me with medicines that will make me feel less-than-stellar but will hopefully hunt down the hairy cells. Some time passes, and my nurse for the day comes into the room.
It takes a special kind of person to be an oncology nurse. As of this writing I have met nearly a dozen. Though their personalities vary greatly, each one has been a caring, sweet person who seems to be able to strike the balance between medical professional and companion to cancer patients like me. It cannot be an easy thing to infuse chemotherapy drugs and other treatments into people all day, some of whom are very, very sick and many of whom have little hope in their life. Yet, it seems that God has made some special people who have the right mix of empathy, professional knowledge and naturally uplifting personalities to fill this role. For that, I am thankful.
When my nurse comes in, we have a short conversation about my lab results, and then it is time to get started. First, the nurse puts in an IV. I prefer my left arm since I’m right handed. Then the tubing and pump are setup, various information is entered into the computer, and a saline drip begins to go into my arm. Usually when the saline starts, I get a weird salty taste in my mouth and a cold feeling all over. Fortunately, the infusion center is well stocked with blankets that are kept in a warmer, which I happily bury myself beneath once the cold feeling starts. Then the nurse begins to add the “pre-medications” to my IV, medicines to help minimize the side-effects of the coming treatment drugs. Of course, pre-meds can also have their own side effects, and typically I start to get drowsy or dry mouth or another side effect or two as these begin to settle into my system.
After an hour or so of pre-med infusion, treatment drugs begin. For 8 of my 12 total treatments, I get two drugs for treatment, and for the other four treatments only one. On days with both drugs, the first treatment medicine is a large, 1 Liter bag. When hooked up to my IV, it is given slowly at first, and the rate is increased every half hour. While this may sound inefficient, it is for a good reason; a minority of people who get the medicine react to it.
Meghann calls me a unicorn. I have a very rare disease. I’m in the minority of people with the rare disease who have it show up before age 65. Also, I am in the minority of people who reacted to treatment by the first drug.
In my second treatment, which also happened to be my first one of getting both drugs, about 50 minutes into the infusion, I was talking to Meghann about something unimportant. Then, I was suddenly overcome by violent chills. I felt as if I had an extreme fever, unable to stop shaking or warm up. Very quickly Meghann had called for help and before I knew it there were four nurses in my room, giving me medicines, stopping the treatment, piling warm blankets on me and getting the reaction under control. The furious chills stopped within a few minutes, and after a good 15 minutes I was finally starting to feel better. Throughout the reaction, my body was completely out of my control, shaking furiously as my immune system panicked. Yet, my mind was strangely calm and peaceful through the whole ordeal. I cannot explain that other than it must have been a God moment.
After the chills had stopped and I had some time to rest, we restarted the treatment again. Interestingly enough, the reaction isn’t an allergic reaction that would require complete stoppage; it was my immune system reacting to the fact that it was under attack from the medicine. Getting the reaction stopped, resting a bit and then resuming the treatment was a perfectly acceptable solution by the nurses and doctors. As odd as this sounded to me, they were right. On the day of the second treatment and my reaction to it, they got the reaction stopped, I rested a while, and then we went on with the remainder of the treatment successfully.
On all treatment days, as the 1 Liter of medicine slowly drips through my IV into my bloodstream, there is a lot of laying around and waiting. I sit and let it drip, sometimes reading, sometimes using my computer, sometimes resting, sometimes chatting with Meghann, and sometimes praying. As a general rule in life, I tend to be pretty content to just sit and do nothing, whether I’m in treatment or not. I don’t get the opportunity to do so very often with a full time job, two small children and a house, so I try to take advantage of the chance when I get it. From that standpoint, having an excuse to do this on treatment days is welcome. It’s not ideal, of course, (I tend to feel lousy on and off) but the opportunity is not wasted.
During this long waiting time, Meghann faithfully sits with me. She uses the free hospital WiFi to work or take care of overdue projects like organizing her phone’s picture collection or cleaning out old emails. With the slow stepping increases in the drip rate of the medicine, the first treatment drug takes 4 hours or more to give. So we hang out all day together at the infusion center. It’s not exactly a dream date, but the opportunity to spend the day together is always welcome.
Over the course of the day, I get a couple of liters of fluid through my IV. Inevitably, that makes me have to go to the bathroom – a lot. Fortunately I am free to get up when I need to, although leaving the comfort of the bed means carefully dragging my IV pump, tubes, and IV bags with me wherever I go. Maneuvering all of that in and out of the bathroom is a delicate dance that happens quite frequently throughout the day. At least I stay hydrated.
I am free to eat throughout the day also, which is a good thing. What I feel like eating, though, is very unpredictable. Sometimes I pack a lunch, and occasionally this packed lunch still sounds good when I get hungry at the infusion center. Other times I don’t touch it. The cancer center has a variety of snacks – chips, trail mix, popsicles, crackers – which sometimes sound appealing and other times sound repulsive. I eat whatever sounds good when I am hungry, and when I am not, I don’t eat. It sounds simple and quite possibly a good lifestyle approach to eating, but as someone who normally gets hungry a lot and typically needs to eat full meals at regular times, it is a notable change.
After the first medicine completes, the nurse starts the second treatment medicine. This one is the actual chemotherapy drug. The bag is tiny in comparison – a mere 8 and a half milliliters – and it takes only 45 minutes to give. Surprisingly, the chemo tends to make me feel only a little bit bad while it is dripping. I can tell it is coming in and affecting me, but the reaction and side effects tend to be manageable during the infusion.
When it’s done dripping, I get another bag of fluids (to make sure I stay hydrated and continue those regular bathroom trips), and then treatment is done. The nurse takes out my IV, gives me any final instructions for the week as well as a reminder to try to avoid getting sick, and sends us on our way. I walk out to the car under my own power, and Meghann drives us home.
Treatment days are long, and I usually don’t feel very good. However, spending time in a cancer center does give you some perspective. Yes, I routinely appear to be the youngest patient in the cancer center by a good 30 years. Yes, I am going to the center 12 times over the course of half of a year for treatments. Yes, I have cancer. Yet, I am very blessed. Many of my fellow patients have it much, much worse. I can walk in and walk out without help or a cane or a wheelchair. I am not losing weight and struggling to eat between treatments. I’m not struggling with other chronic health conditions that make recovering from treatments harder. I still have my hair. Even though it is a lifetime diagnosis, my prognosis is very good. Many of the other patients I see across the hall or in the waiting room on treatment days cannot say the same. I am blessed for sure.
I’m blessed to have good doctors and nurses to take care of me. I’m blessed to be in otherwise good health and be young and generally able to bounce back from the bi-weekly pummeling my immune system takes. I’m blessed with a good prognosis and to be living in a time when this disease is treatable at a cancer center not too far from my home. I’m blessed to have a wife who will sit there with me all day. I’m blessed to have the snack cart guy walk by my room every day and say the same thing he does to all the patients: “I hope you get better. God bless you!” I’m blessed to have hope that I will get better, and I am certainly, tremendously blessed by God.
A Hairy Witness 