thenavigator

Anatomy of a Treatment Day

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.

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.

Hairy Witness

Hairy Witness may be an odd name for a blog, but it fits this one and it fits me. Why hairy? I’m not one of those guys who grows a full beard by skipping shaving once nor do I style my hair in a pony tail. Hairy is for hairy cell leukemia, the chronic cancer that, in 2019, began to reshape my life and those of everyone around me. It’s a rare, slow-growing and treatable condition that over time suppresses your immune system. It’s also the diagnosis that I received, the news that I have had to share with family, friends and coworkers, and the preexisting condition that I will carry for my whole life.

Why witness? I did not watch a car accident take place, and I’m not in a government protection program. Quite simply, I am a disciple of Christ, trying to be a witness to His presence in the world. Just before the Ascension, Jesus told his disciples “You are witnesses of these things”, and I feel moved to answer that same calling today. I am on a journey to wrestle with hairy cell leukemia and life, and as I walk that road, I am called to witness to Christ.

This blog is about that journey. Thanks for coming along with me.