With my hairy cell diagnosis in April, our life began to swirl with a great deal of uncertainty, especially around the topic of treatment. Unlike many aggressive cancers, since hairy cell is slow growing, a diagnosis doesn’t necessarily mean immediate treatment. However, treatment is inevitable at some point. With the meaning of “at some point” not fully defined, we lived in a state of uncertainty for many weeks and struggled to make future plans. Would treatment be soon, or years from now? How would we know when it was time to start? What about that family trip we wanted to take out West this year; should we put that on hold? How about scheduling a trip to see Meghann’s sister in upstate New York in July? Did we have to give up on that couple getaway weekend we had been dreaming about? Should we buy tickets to that concert I was going to take my sister to or the baseball game we wanted to take our kids to see this summer?
Even with the diagnosis, I felt strongly that I wanted to try to have a normal life. Yet the reality of the uncertainty around treatment made this nearly impossible. I attempted to offer this in prayer, but I got no immediate answer or end to the uncertainty.
Then in June after seeing the specialist at Ohio State, my doctors agreed that treatment should begin this summer. There were two options for us to choose from. The more commonly used drug was given over just five consecutive days but would completely wipe out my immune system for at least a few months afterwards, making me very vulnerable to infection. The less commonly used drug would dip and not knock out my immune system but required receiving 12 treatments at the interval of every-other-week over the course of six months. Given that we have two wonderful young children who love sharing everything, especially the germs that they find on the Cheerios under the fridge or in the dirt outside or from one of their little friend’s sneezes, Meghann and I agreed that although it would be a long haul, the second option would be best.
With a treatment option decided, the logistics of the treatment process began to become clear. Treatments were scheduled for every other Friday to give me a weekend to recover with the hope that I could return to work on Monday. Side effects of the chemotherapy were discussed. I shouldn’t lose my hair, but I should expect to be tired. The chances of me getting sick would be higher during treatment, but so long as I used good judgment, I could still live a pretty normal life between treatments. Young and otherwise healthy people like me typically did pretty well with this kind of treatment, so I could be hopeful. Yet, exact side effects varied from person to person, so it was impossible to say exactly how I would feel. Also, a start date was put on the calendar: July 5.
Meghann and I are both planner types, so as soon as the appointments were scheduled, we wasted no time trying to address a lot of the uncertainty that had been weighing on us. That trip to New York for the week of the 4th of July was not going to happen this year, but the tickets for the concert and the baseball game needed to get ordered. Family fun things, like hiking at our favorite nearby trail, and in-progress home improvement projects, like getting the pile of mulch off our driveway, needed to be prioritized in the next two weeks. The trip out West may have to wait for next year unless the treatment went well and the doctors said it was ok.
Yet in spite of the planning, we had only traded one batch of uncertainty for another. How bad would I feel during treatment? Would there be lasting effects from the treatments? How would the kids handle this? Would we really be able to have a semi-normal life in the midst of chemotherapy? Clearly there would be no way to know until we got into it.
As often happens in life, though, God had prepared us for this moment. He had kept Meghann and I together as a couple for over 12 years. We had already faced uncertainty together many times. There were looming college graduations and finding grown-up jobs, a summer where we lived 500 miles apart, difficult decisions about whether to leave or stay in stressful jobs and many times where the next step at a major life decision point was not obvious. What had worked in all of those times was what we fell back on now: talking to each other and talking to God. The answer was not obvious in most of those times, and in some cases it wasn’t obvious until we had taken a few steps down a decision path before we figured out if it was the right choice. In all of those cases we had ended up ok, and unbeknownst to us at the time, God was also using them to prepare us for what we were facing now.
So we faced treatment together, talking about it as a couple and talking about it with God. If I felt really bad, we would just have to rely on our family and friends support system to help hold us up. If there were lasting effects, we would deal with them as they came. If we had to put many normal life things on hold, we would do so in the hope of better days to come. We prayed about treatment together, for ourselves and our children and our family and friends. On my own, I thanked God that He had given me a partner who was actively honoring that promise to be true to me in sickness as well as health.
As July 5 drew close, we got the mulch pile moved and did our family fun outings. We also tried to prepare ourselves for the unknown of treatment that was facing us. As I continued to reflect on the impending treatment process facing me, I had a song that stuck in my head and wouldn’t leave. The melody is pretty new, but the words are very old. (https://www.youtube.com/watch?v=g6LL-dWlDnw) The prayer is used at the start of Eucharistic Exposition, and the words are from St. Thomas Aquinas:
O Saving Victim, open wide
the gate of Heaven to us below.
Our foes press on from every side.
Thine aid supply; Thy strength bestow.
For reasons I do not fully understand, I found myself singing and praying this over and over again as I contemplated treatment.
My wonderful wife also suggested that we establish a routine before each treatment and that we make reading the Bible readings from our wedding together a part of this. I thought that this was a great idea even though we had not sat and read all three together as a couple since our wedding day. So on the morning of July 5, in the lobby of the cancer center before going into the infusion center, we did so. We were both amazed at the striking relevance they hold even now in our life. “Let your light shine before others that they may see your good deeds and glorify your Heavenly Father.” “Present your bodies as a living sacrifice, holy and acceptable to God, which is your spiritual worship. Do not be conformed to this world.” Those two young adults (kids?) did pretty well when they picked those out back then.
Then it was finally time to walk into the infusion center. I wish I could say that I was calm or peaceful, but I was neither of those things. I was nervous and a little scared. I deeply wished I didn’t have to be there that day. I wanted to go home. Yet, I knew it was time to take the steps down a path in faith and hope for the best. I squeezed my wife’s hand, and together we stepped into the treatment center and the journey toward a healthier me.