Study Subject.

It was my senior year of college. My journey to this point was a non-traditional one. One year at a Bible Institute (shoutout to my WOLBI people!) studying the Bible and only the Bible, two years at a christian liberal arts college (hey Grace College alum, go Lancers!) studying biology, a brief one year hiatus (I dropped out to get married) and then I spent two years finishing a degree in psychology at Iowa State University (go Cyclones!).

During my year off of college – I think nowadays the kids are referring to this as a “gap year,” I just called it dropping out to get hitched – I did some serious rethinking about my course of study. I loved biology and still do. However, I was having a hard time swinging the chemistry classes necessary to complete my degree. Chemistry and math were a constant source of struggle for me during my academic career.

I decided to shift my study from a physical science to a social science. I have always loved people and have been fascinated by what makes them tick. I wasn’t sure exactly what my long term career goal was, but I figured at the very least, it would lay a good foundation for any future career I hoped to have. After all, no matter what you do in life, there is no escaping people.

So, here I was studying psychology. I took classes in learning and memory, abnormal psychology, counseling and developmental psych. I studied psychology of women and social cognition. I loved everything about my classes. They made sense to me. They were exciting and engaging. Then came Psych 491 – a practicum as a research assistant in a psych lab. It was the whipped cream and sprinkles to what was already a degree program that I loved.

The lab I worked in was a research lab focused on studies pertaining to psychology and the law. Study subjects – freshman in psych 101 – would come in two at a time, go in to separate rooms and take a test. Not a hard test, just basic questions. After we collected the tests from them, we “graded” them while they sat and waited. One subject would be excused while the other would sit waiting. My job was to go in to that second subject’s room and accuse them of cheating. They obviously hadn’t actually cheated, but I pushed until I hopefully got a confession from them.

I always felt just a little bit bad for the poor freshman I was accusing of academic misconduct, but I was good at my job. So good that at the end of the school year at our lab party, my professor awarded me the “biggest bad-ass” award. You can’t make this stuff up.

I learned so much from my time in that lab. I learned how to create a testable hypothesis, craft a study to put the hypothesis to the test and how to carefully collect data, hopefully gathering information that would benefit others and also support the hypothesis.

11 years ago, when I was standing across from one study participant after another, I had no idea that I would one day be in their shoes in a very real way.

Today, I am a study subject. I am a data point in someone’s proposal to test a hypothesis.

The hypothesis is that patients with relapsed refractory Hodgkin’s lymphoma (me) would have a better response when given an approved chemo pill in conjunction with a new experimental medication.

The process is that those patients would take both medications every day for two years. The patients are closely monitored through the process. Labs are taken once a week to be sure that all blood counts and metabolic rates are at appropriate levels. Every 3 months during the study, patients are scanned to check on their response to the treatment. If little to no response is measured, patients continue with the treatment. However, if the disease progresses, patients are pulled from the study and sent back to the drawing board.

That is my summary of the 21-page informational document I was given in December when I was asked to consider being a part of this clinical trial at Penn Medicine.

At the time it seemed like the best direction to move, but we still took a couple weeks to pray about it and seek wisdom.

I officially became a study subject on January 2.

I have been back to Penn twice since starting the trial. The first trip back, my labs weren’t great. My white blood cell counts and neutrophils (specific white blood cells for fighting illness and infection) were way down. With it being cold and flu season, this was a little more concerning. So I left the hospital that day armed with 3 syringes full of neupogen, a white blood cell booster, and instructions on how to give myself shots. I was also instructed to hold my trial medications until my labs could be rechecked the following week. After 3 days of shots, my counts rebounded beautifully and I was able to start my medications again.

My second trip back was more of the same. My neutrophils looked better, but my white counts were tanking again. My oncologist explained that the beginning of a new medication like this is often turbulent until your body adjusts, so he doesn’t seem concerned. He felt comfortable with me continuing the medication…and the shots.

I go back again in two weeks for another check up and until then, it’s neupogen shots three times a week.

Physically, I am still feeling great. The only things I am struggling through right now are the usual amounts of fatigue from taking care of 14 kids and the aches that come after the neupogen shots. Although, I am on high alert every day for any side effects.

Emotionally, I feel like I am doing well also. It feels good to be moving in a direction. Every time I am in the clinic at Penn, I have to fill out a wellness questionnaire. There are about 35 questions that I have to answer, all on a ‘Not at all’ to ‘Very much’ scale. The questions are half about my physical well-being and half about my emotional well-being. I am reminded every time I have had to fill out that questionnaire, how fortunate I am to have the support I do. I can’t imagine what it would be like to answer the question “I get support from my friends and family” as a ‘not at all’ or ‘very little.’ It is with ease that I circle ‘very much’ for almost all of the emotional well-being questions. To have hundreds of people praying for me, asking me how I am – how I really am – and encouraging us through words and actions, is not something I take for granted.

Thank you for continuing to journey along with me.