witness – A Hairy Witness

Just Wait

“Just wait.” Since we were babies, we’ve heard this over and over. Wait for dinner. Wait until you’re older. Wait for me to finish. Wait until we get there. Wait for your birthday. Even when we grow up, we still have to wait. We wait for our ride. We wait for that vacation or that baby to be born. We wait until the time is right to get married or buy a house or change jobs or retire. Life is full of waiting.

Is all of this waiting a big waste of time? Is it something we just have to get through on our journey to that place we would rather be?

Our 21st century American culture certainly seems to think so. “Early access,” “skipping the line,” and “same day delivery” are all things people will pay extra for. When you ask someone about their day, many are quick to point out the time they spent waiting negatively: “I had to sit in traffic” or “the checkout line was long” or “my flight was delayed”. Similarly, people are positive when they don’t have to wait: “My train was on time” or “the doctor got me right in” or “my package was delivered early.” When we do have to wait, we are typically quick to pull out our phones, scrolling endlessly to numb the pain of having to wait. In our society, waiting is our nemesis. Time spent waiting is time spent holding us back from doing our next important thing in our busy, modern life.

Six years ago, on the feast of St. Nicholas, I completed my last chemotherapy session. I was thrilled that day to be finished with treatment and, a month later, to be declared in remission. I didn’t realize it at the time, but this joyful moment also set up one of the oddest tensions of waiting I can imagine: waiting for the cancer to return. Hairy Cell Leukemia is a chronic and incurable cancer. That means, statistically speaking, it is likely to come back some day. No one can say for sure if it will come back or exactly when it will come back, so we watch and we wait. Several times a year now, I go to visit the oncologist for blood tests and a check-up to see if it is returning. In the week or two leading up to the visit, inevitably my anxiety increases as I wait for my appointment. What if my numbers don’t look as good this time? What if it’s coming back? The anxiety increases even more as I wait in the lab and wait in the exam room and wait for my results and my doctor. Then, finally, the anxious waiting is over, and the doctor comes in to reassure me that all is well. I breathe a sigh of relief, say a prayer of gratitude, and settle down from my short-term anxious-about-my-appointment waiting back into my regular, long-term hoping-it-doesn’t-come-back waiting. For now, everything is ok. At least that is how they all have been for the last 6 years.

To live with a chronic cancer in remission is to live a life of waiting, except that unlike waiting in a checkout line, this is waiting you don’t want to hurry along. I wait for something I hope will never happen. My paradox is that I wait and hope for more waiting.

Advent, which we are in now, is a season of waiting. My seven year old daughter would be quick to tell you that Advent is about waiting for Christmas, and my ten year old son would be sure to add that it’s also about waiting for Jesus’ second coming (in a knowledgeable big-brother-I-told-you-so-little-sister kind of way). They are both right, of course, but as I have reflected on things this Advent, it seems to me that waiting is about more than just getting to that destination of Christmas and the Second Coming. My growing hunch is that there’s something more to waiting than just making it through to the end.

What if we flip our perspective on the time we spend waiting? What if we recognize that our life is still happening while we wait? What if waiting is actually a good part of our life, one that we can too easily overlook?

Unlike a movie we stream or a video game that we play, our life doesn’t pause when we wait. Our hearts keep beating. We keep breathing. The trees move in the breeze. Children play around us. People are doing things. While it may be tempting to think of our waiting time as a frozen moment, in fact life is still happening while we wait.

As a young adult, I used to like to say “patience comes to those who wait.” My early twenty-something sense of humor smirked at the wise-sounding tone barely masking a seemingly obvious statement. One thing my younger self missed, though, is that patience is a choice. You can spend your life waiting without developing patience. Maybe it’s more accurate to say that “patience comes to those who wait and choose to notice what is happening while they wait.”

For someone with a chronic cancer in remission like me, that time of patient waiting — the life in between — is a tremendous gift. That’s the time I’m spending watching my kids grow up and traveling with my wife and building important things in my career and developing a deeper faith and expanding my understanding of my Marianist identity and a whole host of other things — it’s my life. On my best days, I see that and am grateful for the opportunity to wait, whether it’s at the airport or in line somewhere, because I recognize that life is happening and that it’s a gift to be living it at that moment. (On far too many other days, though, I forget about this and am impatient and wanting everyone to hurry up and staring at my phone.)

Maybe there’s an invitation to all of us to change our perspective on waiting this Advent. After all, the season of Advent is longer than the season of Christmas. We spend more time waiting for Christmas than actually celebrating Christmas. Perhaps this perspective can help us embrace the waiting parts of our lives. Perhaps we can take a day or an hour or a single moment to notice the life that’s happening around us while we wait. Perhaps we’ll flip just one minute of frustrated waiting into a positive moment of appreciation. Perhaps even a single moment like this might be enough to help us prepare well for Christmas this year. If we get this right, we’ll be glad we stopped to wait for it.

Just wait.

Treatment Begins

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 4^th 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.

April 17

To say it was a busy day in a frantic week in a chaotic month might be an understatement. My daughter had just turned 1, and we had just hosted a modest but nice party for her. My 7^th wedding anniversary was a few days away. My wife was actively starting an exciting and new consulting business on her own. My preschooler son was asking hundreds of insightful questions on all topics as he continued his quest to learn everything there is to know. It was Wednesday in Holy Week, just before Easter, and my involvement with our parish choir was at its peak level for the year – the final rehearsal night before 4 consecutive days of the different Triddum Masses and Easter. Easter would bring not only music and Mass but also egg hunts for my kids and packing up the car for family gatherings.

At work, there was chaos. I had a new team member on his third day who needed training and was actively recruiting two more. I was frantically preparing for two back-to-back weeks of business travel with two different customers needing large amounts of work from our small and overburdened team. I was giving a presentation to our company of 25 people that day, and I was caught in a cycle of never-ending meetings and a calendar that refused to give me a moment’s break. This constant bombardment had me expecting to be working the coming Friday even though it was scheduled to be a paid day off.

At the same time, my grandmother lay dying in a nursing home, having not eaten for 5 days. After a good 93 years of life and a recent series of strokes, it was clear that her time had come. As one of my biggest life cheerleaders and best pen-pals (as well as the one who had always made sure I had plenty of cookies and pie), I was already mourning her even thought I knew that she would soon be free of the earthly suffering she was enduring.

This was April 17, 2019. It was in the midst of this daily-life chaos that my phone rang. Though I had put it off for nearly two years, in February I had finally decided to act like a grown-up and had gotten established with a family doctor. The routine blood testing he had ordered showed abnormalities with my immune system levels, so he had referred me to a hematologist. As all good hematologists do, she had picked and poked and tested me and my blood over the course of several months. Up to this point on April 17, she had found nothing. When my phone rang, it was my hematologist on the other end, and this time she had news. The results of the final blood test she had ordered had identified something that explained why my immune system was lower than normal, and its name was hairy cell leukemia.

I learned a lot about hairy cell leukemia in that short phone call. It’s a rare disease and the treatment is usually very successful. It is slow growing and not aggressive, but it is cancer. Because it grows slowly, it doesn’t require immediate treatment, but treatment will be required, likely more than once in my life. Treatment means chemotherapy. There is no cure, but the treatment should put it into remission. She wanted to refer me to a hairy cell leukemia specialist at Ohio State for a second opinion. I needed to get some additional tests and scans done to see what it was doing to my insides, but the prognosis was good. I hung up, somehow both retaining this information and keeping a straight face in front of my coworkers as I walked out of the building and to my car in the parking lot to be alone.

I wasn’t quite sure what to do next, so I called my wife Meghann. I hated to deliver this shocking news by phone, but I knew that she’d soon be picking up our kids from school, and I wanted to give us both time to start to face this without an audience. She was as unsure as I was about how to react to the news. I pondered. She cried. We prayed. We were scared. Our future suddenly looked the most uncertain that it ever had. We agreed that we needed to work through this more before talking to anyone else about it, and then we both did our best to finish out the rest of our day as normally as we could. She went to pick up the kids. I went back to my office and dove into my last meeting.

Over the next several weeks, we grappled with the news of April 17, responding in faith as best as we were able. We celebrated Easter with joy, albeit tempered joy. We buried my grandmother a couple of days after Easter, entrusting her to God, even though I mourned extra with the weight of hairy cell on my mind. Meghann and I prayed together and separately. We decided that rather than try to suppress the scary thoughts floating around in our heads that we would acknowledge them openly together. We carried on with normal life as best we could – I did my business travel and she continued to build her company. We told the kids that daddy has sick blood but that daddy’s doctor would help it get better. After much discernment and discussion, we decided to share the news of hairy cell with both our immediate families and our small church community — 9 of our closest friends in faith to lean on as we worked through things. I got the additional tests and scans done, and we saw the doctor at Ohio State. We felt fear, grief, sorrow, anxiety and a wide range of other emotions.

I felt myself crying out to God through this time, and what I got back was largely silence. “God, I want to live to see my kids grow up!” Silence. “God, I want to be here to take care of Meghann, and I want get old with her!” Silence. “God, please heal me of this cancer, and please help us as we deal with this.” Silence. “God, I miss Grandma, and that makes me sad.” More silence. Yet, this silence never once felt like the silence of someone who is ignoring you. It was the silence of someone who is a good listener, letting me say what I needed to say and waiting their to speak. That subtle confidence that it wasn’t an empty silence, a blessing in its own way, kept me praying, kept me going to Mass and kept me from getting angry at the silence I was hearing.

Finally, one Sunday about six weeks after April 17, I stood in church, and two things happened almost in the same moment. First, I heard Grandma’s voice in my ear say “I’m fine, Matt.” At nearly the same moment, I heard a voice that I can only attribute to the Holy Spirit say “I’ve got this cancer thing.” In this moment, the anxiety, fear and deep spiritual mourning that I had been wrestling with for weeks was gone. Gone was the sadness I felt at Grandma’s passing. Gone was the fear of not seeing my kids grow up. Gone was the anxiety of not being around to grow old with my wife. Gone was the terror that cancer would win this. Best of all, gone was the silence.

My life changed forever on April 17. It is still unclear where this journey will lead, but once again I know deeply in my heart that I am not walking this path alone. God is walking with us, too, and He’s got this cancer thing.