hairy cell leukemia – A Hairy Witness

Grateful

Living with a chronic cancer means perpetually walking around with the knowledge that some day your cancer will return. Even when your doctors assure you that a long remission is likely, there is always, somewhere in the back of your mind, an awareness that one day you will be staring at concerning test results and having difficult conversations with your doctors and facing a barrage of infusions and medications. It usually doesn’t dominate your consciousness; rather it lurks in the recesses of your memory, waiting for opportunities to leap out in front of you to get your attention and fill you full of dread. For me, that anxiety surfaces almost predictably in the days leading up to an oncology check, no matter how routine it is supposed to be. The logical side of me is assuredly confident that everything will be fine, but the doubtful fear of cancer relapse is louder and cares not for my logic.

Being a rare disease unicorn, I am lucky enough to have not one, but two oncologists. I have one hematologist/oncologist locally whom I see more frequently, and I have a specialist in hairy cell leukemia a short car ride away that I see less frequently. While having both of them really is a blessing, it also significantly increases the opportunities for that anxiety of relapse to stalk me. I most recently went to see my local oncologist last December. In the days leading up to the visit, I predictably had a bout of doubtful anticipation. This time, the thought that kept popping into my mind was “what if this is the first time that my counts don’t go up?” For some context to the worry, hairy cell leukemia produces non-functioning white blood cells that, left unchecked, ultimately crowd out every other type of cell in your blood: healthy white blood cells, platelets, and even red blood cells. In my case, my white blood cells and platelets were very low when the cancer was diagnosed and got lower in the first part of treatment, ultimately reaching their lowest point about a month into chemotherapy. Since that dangerously low immunity level, every single time my blood cell counts had been checked, they had improved. Every time. Sometimes it was a small amount and sometimes it was a large amount, but they’d always gone up for the last two and a half years. My logical side knew that it wouldn’t continue to go up forever, (after all, the goal of any cancer treatment is stopping uncontrolled growth), yet even though all of my blood cell types had crossed into the “healthy range” in late summer 2021, the irrational doubt lurking in the back of my mind kept reminding me that counts going down are what will indicate a relapse of cancer. Counts up, good; counts down, bad. My emotional side was masquerading its anxiety as logic.

While I sat in the exam room waiting for the doctor that day, I stared at my phone to review the results of my labs drawn a few minutes earlier. It is a change for the better to give patients immediate access to their test results now, but it also means that connected patients see their results before their doctor can talk to them about it. As I studied my results, there was one thing that I couldn’t ignore: for the first time in two and a half years, my white blood cell count had gone down. The decrease was incredibly minor (a tenth of a value in only one measurement) and I was clearly well within the healthy range (nowhere close to the lower edge), but my irrational side fixated on the fact that one of the numbers had decreased. It had stopped going up. Did that mean the cancer was coming back? Was my remission doomed to be short-lived? In the midst of this internal swirl, my doctor walked into the room and cheerfully told me “your numbers look great!” I wasn’t feeling great about them, but she continued by telling me that my counts had been steady for a long enough time that I had “graduated to coming to see me every 6 months!” My doubtful side protested; what about the slight dip in my counts since last time? Was that a cause for concern or a bad omen of things to come? When I asked, being the good doctor that she is, she gently responded with “I think that your body has settled into what ‘normal’ is for you. I have no concerns about what we’re seeing. Your numbers are healthy. See you in 6 months.”

I walked out that day with an appointment to see her in half of a year feeling better. Yes, my counts had technically dropped by the tiniest of amounts, but that did not indicate that my cancer was back. All signs pointed solidly toward full remission for nearly 2 years. The doubt was quieted again, for a time.

This winter, various sicknesses tore through our house over several months. Much of it was the usual preschool bugs that are expected when you have a 6 year-old and 3 year-old in the house. We were also lucky enough to contract something that looked and acted like the omicron variant of COVID but surprised us and our doctors by testing negative multiple times. I got sick with pretty much everything that came into the house, and as usual, I had the hardest time getting well. Being sick on and off for a couple of months and then always seeming to take a while to get well again left space for the relapse doubt to again rear its ugly head. Was the longer recovery than everyone else a sign of returning cancer? Sure, it was a secondary sinus infection following a virus just like some of my coworkers, but in my case was that showing something bigger was wrong? Would my next visit to the oncologist bring me bad news? When you are continually run down by a relentless parade of respiratory infections, it’s easy to start to think that things are worse than they really are.

Then in late March, it was time for my annual visit to my hairy cell leukemia oncology specialist. Much to my delight, the doubt about relapse felt very manageable in the lead-up to the visit (perhaps it was the anticipation of leaving for an anniversary trip with my wife the next day). I made the drive, filled all 7 tubes with blood, and waited in the exam room for the doctor. When the results were posted, I was pleased to see that there had been no change or slight improvements to all of my counts from their December levels. Not today, anxiety. Then the doctor came in and told me that he was happy with my labs. He explained that now that I have passed 2 years of remission, I am no longer at high risk for near-term relapse or for having the difficult-to-treat type of hairy cell leukemia. Even though relapse could occur in the future, the same treatments should be effective next time. For now, I should see my local oncologist every 6 months, see him once a year, and in between I should live my life. I was surprised and thrilled with what he said, and I asked him if I am still “high risk” with respect to risk for COVID complications. I told him how our family has lived during the pandemic: in 2020 we isolated from absolutely everyone for half the year due to my very low immunity, how we had “bubbled” with another family for the 6 months until I could get vaccinated, and how we had continued to use slowly decreasing caution for 2021 and into 2022. I also admitted how much we have been feeling the strain of this lifestyle and want to sensibly continue a return to “normal”. Being the expert that he is on this type of thing, he responded by citing a recent study of cancer patients treated with the same medications I received that showed a reduced ability to fight COVID infections well after chemotherapy had ended, as much as a year and a half after treatment or more. Then he said the most validating words that I have heard from anyone in a long time: “you and your family absolutely have done the right things throughout the pandemic.” He went on to say that based on everything, it was ok to continue to sensibly relax now. “Get out and enjoy the summer with your family.”

He left the room, and I sat there stunned, overwhelmed, and incredibly validated. Living through a global pandemic that has killed nearly a million people in this country while immunocompromised after a year of fighting blood cancer has been stressful beyond adequate words. Lengthy blog posts can’t even fully do it justice. Said simply, it’s been a challenging 3 years. Yet I had just been told by the person that I trust most about hairy cell leukemia that not only could I quiet that doubt about my cancer returning soon but that I also could move about in the world again as a “normal” person taking “normal” precautions for COVID health instead of extraordinary ones. This is recovery, not just remission. Recovery is now my reality.

I walked back to the car, turning this over in my mind, and prepared to call Meghann to give her the good news. I struggled to find the right word for what I was feeling. By the time I got on the phone with her, the best word that had come to mind was “blessed.” Blessed is a good word and certainly described how I was feeling. Yet through my emotional and joyful conversation with her and the hour drive alone afterwards, I realized that “blessed” wasn’t the word that most accurately articulated how I was feeling. The word was “grateful.” I was, and still am, overwhelmingly grateful to the depths of my soul.

I am grateful to be alive, and I am grateful to be in remission. I am grateful for an immune system that is finally working properly and grateful for real recovery. I am grateful for the doctors and nurses and pharmacists and medical staff that have taken care of me and been instruments of healing in my life. I am grateful for not getting scarily sick or hospitalized when I was immunocompromised, either from the vicious cold I got in September 2019 during chemotherapy or from COVID for the first two, brutal years of its existence. I am grateful for everyone who dutifully has worn their masks when needed throughout the pandemic to protect vulnerable people like me, and I am grateful for life-saving vaccines. I am grateful for understanding and accommodating jobs and for good health insurance. I am grateful for the support we have received for the last three years from neighbors, coworkers, friends, family, and strangers. I am grateful that in spite of all of the challenges in their daddy’s life, my children have been able to grow up so well from their 3 year-old and 1 year-old selves at the time of my diagnosis into the 6 year-old and very-soon-to-be 4 year-old big kids I have today. I am grateful for a thousand other big and small things, and I am grateful to God for hearing my cries and answering them with tremendous love.

Perhaps most of all, I am grateful for the grace that God has bestowed throughout the last 3 years, especially in the tremendous love and support from my wife, Meghann. She has stayed true to her marriage vow to me far beyond what she could have possibly known that she was signing up for. That little “in sickness and in health” phrase she promised me nearly a decade ago was easy enough to say on our wedding day, but it hasn’t always been easy to live out. She’s put the needs of my health and our family above her own repeatedly, even when that meant significant self-sacrifice. She sat next to me during all 12 infusion sessions and countless medical appointments. She holed up away from the world with the kids and me to keep my weak body safe in the early parts of the pandemic. She’s encouraged me when I wasn’t feeling strong, and she’s helped to pick me up when I’ve been down. She’s truly lived out that promise “to love and honor” me as she has stayed true to me through both these good and bad times. It hasn’t been easy for her, but I am grateful beyond words to the very real love of God that I have witnessed through her love for me in the last 3 years. I love you, Meghann, and I am grateful for you more than this essay can say.

An interesting thing that I have realized recently is that when your heart is full of gratitude, there is little space left for doubt and anxiety. The words my oncologist spoke to me that day in March opened my heart to an awareness of gratefulness beyond what I have felt in a long time. That grateful heart has banished the doubt and anxiety of cancer better than anything has in the last 3 years. Will that anxiety return again? At some point, yes. Will it get the best of me? Perhaps. My hope is that, so long as I can hold onto this grateful feeling in my heart, the answer is no. A grateful heart may not be 100% effectiveness in immunity, but it is a powerful vaccination and antidote that should not be underestimated.

How do you hold onto a heart full of gratitude? I believe the way to do so is to live a life of being grateful all the time. That’s both saying thank you and living thank you. When you are grateful, don’t keep that grateful feeling to yourself. Share gratitude with others. “Pay it forward” for someone else. Do something nice for someone else, just because. Tell people “thank you” and mean it. Accept thanks from someone else and trust that they mean it. Resist the urge to keep score with others. Be grateful to God, and show God how grateful you are by living it out. In the passage from Matthew’s Gospel that was read at our wedding, it says “let your light shine before others that they may see your good deeds and glorify your heavenly father.” What does it mean to let your light shine before others? Today I understand this to mean living a life of gratitude. After all, God has given to all of us freely out of love, and none of us will ever be able to repay him. That is a big reason to be grateful.

Are you grateful? I am.

Hope

I love my kids dearly. I want only the best for them. I also want them to sleep a little later in the morning. While some of our friends lament that their young kids wake them up at 8 AM, I am ecstatic if ours make it to 7. For a variety of reasons, sleep has been an effort in our household lately, and I have been awake (or at least out of bed) with my dear children before the sun rises most mornings. In their defense, the sun does sleep pretty late this time of year, but in my defense, it is a rare day in this house for the people who live here to sleep late.

About two weeks ago, we were up before the sun again. The kids and I were sitting at the kitchen table eating breakfast. Right now our ongoing game of let’s-trade-seats-at-the-table-with-each-other has me sitting so that I can see out the window while I eat (thanks, Meg, for taking the one with your back to the outside). As the kids and I sat eating our cereal and discussing their favorite Christmas shows, a faint glow started to peek up over the eastern horizon. We continued with our toast and juice, and the dim glow grew steadily brighter, bursting out in pink and purple and blue. Soon the whole eastern sky was filled with colorful light, dancing on the trees and houses in the horizon and leaping over the thin, wispy clouds floating through the air. Not content with the limits of the eastern sky, the color spilled over, flooding part of the southern sky and tickling the edges of the sky to the north. The sunrise was truly amazing that morning, and watching the whole thing filled me with a great deal of hope. The dark night yielded to the beautiful light of a new day.

I often find myself quietly singing in response to the world around me, and watching the sunrise that morning inspired an Advent-appropriate choice:

The King shall come when morning dawns,
And light triumphant breaks;
When beauty gilds the eastern hills,
And life to joy awakes.

The triumphant break-through of sunlight gilding the eastern sky after a dark night should fill us with joy. The fact that we live in a world where we can count on this every single day – that there is a God who wants this for us every single day – should fill us with tremendous hope. This hope that the light will scatter the darkness is what Advent is all about. Christmas, then, is the sunrise of a new day.

2020 has had its share of dark days. Many people have been sickened with COVID, and far too many have died. For those of us who have extra risk factors like my weakened immune system still recovering from leukemia treatment, doing the right thing to stay healthy has involved its share of dark nights and days. We’ve stayed away from our family and friends (the kids are fluent in video calls and “air huggies” by now). We’ve stayed home (I haven’t driven this little since I got my driver’s permit almost 20 years ago). We’ve ridden the emotional roller coaster of highs and lows (thank goodness the shortage of tissues was less severe than the shortage of toilet paper). There has been darkness. Yet, there has also been hope. There is real hope that the pandemic will not last forever. The sun will rise again. A new day will come.

The world waits in darkness every night. Sometimes the night is very long (such as the nights when I’m awake comforting a toddler who just had a nightmare at 1AM and up again at 3 soothing a preschooler scared of the howling wind). Other times the night passes more quickly (those rare nights where we all sleep through the night). In any case, we wait in darkness a while hoping for the new day, and eventually the dawn comes. The sun climbs up over the horizon, and the light returns. Sometimes that sunrise is a memorable, fantastic light show that dazzles all who can see it. Other times it’s just the return of illumination to the landscape through gray clouds. Regardless, the hope we have in the new day is well-placed.

The COVID night is not over, but the glow of a new day is creeping over the horizon. We already have what we need to wait in the dark – wearing our masks and keeping our social distance – and the light of the new day heralded by a highly effective vaccine is emerging.

Boats and a Helicopter

I have heard a surprisingly large number of people dismiss the vaccine as a hoax or a form of they’re-out-to-get-me-conspiracy-theory-doomsday-device or even a true evil in the world. As I have reflected on these assessments, I am reminded of a modern-day parable that I first heard as a kid.

There was a woman who made the bold decision to rely entirely on prayer for everything. God would give her whatever she needed, so long as she asked. Her faith was unshakable and would stand up to any test.

One night, she awoke to find her house flooding. The nearby river was swelling from the heavy rain, and her house was quickly going underwater. She managed to climb out her bedroom window to the roof, barely staying above the rising flood waters. On the roof and still faithful, she prayed to God to save her from the flood. A few minutes later, a neighbor in a row boat paddled close to her house and asked her to get in the boat with him. She politely told the neighbor no. She did not need a rowboat. She had prayed, and God would save her from the flood. Puzzled, the neighbor paddled away to help someone else.

Alone again in the dark, she prayed to God to save her from the flood. A minute later, she saw lights approaching. It was a motor boat with two firefighters inside, and they came near her house. Seeing her on the roof, the firefighters steered their boat close and asked her to get into the boat. They would help her climb down the steep roof to avoid slipping into the rushing flood waters. She told them to save someone else; God would save her from the flood. The firefighters were reluctant to leave her, but at her repeated insisting and refusal to get into the boat, they finally departed to look for others.

Alone another time with the flood water continuing to rise, the woman prayed confidently to God, asking her to save him from the flood waters. Within seconds of finishing the prayer, the sounds of a helicopter could be heard. It was a rescue helicopter, operated by the national guard, who were out attempting to save people from the flood. The crew saw the woman on the roof and hovered over her, dropping a rescue line and sending down a trained crewman to pull her from the roof, which by now was nearly covered in floodwater. The woman outright refused to be rescued by the helicopter crew, insisting adamantly that God would save her from the flood waters and that she was trusting in Him alone. The crew should rescue someone else, she insisted. God would rescue her. In spite of the water now touching her ankles and the pleading of the helicopter crew to grab the line, the woman would not budge from the roof. She flatly refused, continuing to insist that God alone would save her from the flood. The crew received a call of another person stuck on a nearby roof and finally relented to the woman’s demands, leaving her alone.

Soon after the helicopter left, the woman was swept into the flood waters, where she drowned. She found herself standing in front of God in Heaven. She looked at God and said, “God, I made the firm commitment to rely only on you. I prayed to you in my time of great need just now in that flood. Where were you on the roof down there? Why didn’t you save me like you promised me you would?”

God looked at her and replied, “I sent two boats and a helicopter.”

I am not entirely sure where I heard this parable originally, but I think of it quite often. The answers to our prayer aren’t always dramatic miracles. We don’t always walk on the top of the flood waters. Sometimes God sends us a boat with a friend inside. Sometimes even if we ignore that boat, He’ll try again by sending another boat or even a helicopter to save us from the floods of life. Sometimes, like the woman on the roof, we overlook the help we’ve asked for more than once. There are times for miracle rescues, and there are times for simple row boats to escape life’s floods. It’s important for us to remember that God uses the ordinary for the extraordinary.

I have seen the boats-and-a-helicopter rescue happen in my own life. I did not have a scientifically-unexplainable miraculous cure to my hairy cell leukemia. What I did have, though, was the row boat of a well-timed routine family doctor blood test followed by a motorboat driven by a persistent hematologist and then a helicopter crew of rare disease specialists, nurses, doctors, pharmacists, lab technicians, and many others who pulled me from the flood waters of cancer. God heard my prayer to be saved from the rooftop when my body was flooded with non-functioning white blood cells and sent these seemingly everyday boats and helicopters to answer those prayers. I call that an ‘ordinary miracle.’

The world is now trying to escape the rising floodwaters of the COVID pandemic. Wearing our masks and keeping distance from each other is how we’re climbing to our rooftops to stay above the water. There are boats and a helicopter coming to rescue us, and we better know them as the vaccines. Yes, the vaccines are human-made, and yes humans are imperfect beings that make mistakes. However, it’s unfair for us to assume that just because something was made by humans that God can’t also use it as the answer to a prayer of need. The row boat, motor boat, and helicopter from the parable are made by humans. When we’re on the roof surrounded by rising flood waters, should we really be telling our neighbor that we don’t trust their row boat because they haven’t used it in a flood before or arguing with the firefighters about whether or not the horsepower of the motor on their motorboat is powerful enough to fight the current or lecturing the national guard crew about how the internet says that their helicopter is actually a tool of an extraterrestrial spy agency that will cause anyone who touches it to turn into a purple mongoose on their 37^th birthday or the next time Jupiter and Saturn appear close together in the sky, whichever comes first? Of course not. We should do what the woman in the parable did not do. We should get in the row boat or the motorboat or the helicopter when we have the chance to escape the flood. In the flood of this pandemic, we need to get the vaccine as soon as we are able so that we can all get off of the roof.

There is a real temptation for us humans to tell God how things should be done. If we’re honest with ourselves, though, projecting our own assumptions on how God should answer our prayers – such as if I would have demanded nothing short of a miracle healing to my hairy cell leukemia – is incredibly belittling of God. Who are we to tell Him how to answer our prayers? Who is in control? Shouldn’t we let God be God in the way God wants to be God? We need to remember that this is the same God who opted to be born in a barn and to die a literally excruciating death for us. Would any of us humans, even our smartest throughout history, have thought that was the right idea to answer humanity’s prayers for salvation from darkness? If God wants to rescue us from the flood in a leaky rowboat, who are we to stand there and demand a yacht?

If God wants to rescue us from the flood in a leaky rowboat, who are we to stand there and demand a yacht?

When we’re sitting in the dark, sometimes it’s hard to imagine what all we can see in the daylight. We need the sun to come up to show us new possibilities. This time of year invites us to think beyond the darkness of the present moment. Advent reminds us that even when we wait in the night, there is reason to hope. The dawn of true light is coming. Christmas reminds us that this light has come into the world. As one of my favorite Advent and Christmas readings says, “The people who walked in darkness have seen a great light, and upon those who dwelt in the land of gloom, a light has shone.“

Let us not constrain God by thinking that those made in His image cannot also be the instrument of His answering prayer. We must not fall into the temptation of thinking technology invented by humans is automatically evil. He empowered us to invent helicopters and vaccines, both of which were created to save people rather than harm them. Let us also avoid thinking that the darkness around us will always be there. The light is coming, and we should not let go of that hope. Let’s all keep praying for God to rescue us and that we not be too blind to see the answer to that prayer when it arrives. We need to get in the boat when we can so that we can float to safety from the flood. Finally, as we continue to celebrate Christmas, let’s remember that true hope came into the world in an ordinary manger. As in times of old, we continue to pray:

Come quickly, King of kings.

Our hope is in You.

Our Light Has Come

Light has been on my mind quite a bit lately. Maybe it’s just the gray, overcast nature of winter in the Midwest. Every January and February I catch myself thinking “Couldn’t we just have one sunny day? I don’t even care if it’s cold.” The short days and long nights don’t help much either. When it’s dark in the morning when I wake up and dark in the evening when I leave work, inevitably I find myself longing for brighter days.

In the midst of the darkest months of the year in the northern hemisphere, we hear readings that talk a lot about light. I am not sure if that is coincidence or intentional, but it is noticeable. During Advent, we hear about being in darkness and waiting for light. At Christmas, we hear about the light coming into the world with the birth of Jesus. After Christmas, we hear about John the Baptist testifying to the light and pointing everyone to Jesus. In the weeks that follow we get told about how the responsibility is on us to help bring the light to the world. Mixed in with these stories are several variations on one of my favorite scriptural phrases:

The people in darkness have seen a great light.

I have always liked that phrase, but as I reflect on the past year, it feels even more personally relevant.

We lived through some dark periods in the last year. I was diagnosed with cancer and underwent chemotherapy. Meghann quit her job and figured out how to start her own business. Our kids were both hospitalized at different times. There were challenging periods in my job. Members of our family got pretty sick. We said farewell to my grandmother. Our plans were rearranged, postponed, and canceled. Life was pretty dark at times.

Yet, the darkness did not win.

Meghann’s business took off and became quite successful. Our kids bounced back quickly and continued to grow into happy, healthy, smart children. The challenging periods in my job ended with good outcomes. My sick family members got better and eventually resumed their normal lives. Grandma is at peace in Heaven. We were able to squeeze in a few trips and events, especially the important stuff.

Most excitingly: my hairy cell leukemia is gone.

My last chemotherapy session was in December, a few weeks before Christmas. In January, I had another bone marrow biopsy done that confirmed that my hairy cell leukemia is fully in remission. In fact, none of the indicators of hairy were there at all in my most recent biopsy. My biopsy looked like a normal healthy person. Hairy is gone. Our family and friends who have been in darkness with us, have seen a great light.

Hairy cell leukemia is a chronic cancer with no cure, so there is a very good chance that it will come back again some day. However, there is good medical reason to hope that my currently young children will be young adults before it does. In fact, my specialist at Ohio State said that he hopes to be retired before it comes back for me, and that he plans on working at least another 10 years. I hope he’s right. If hairy does come back, the doctors say that it can be treated again using the same methods just as effectively. Even more optimistically, as fast as cancer treatments are advancing right now, by the time it comes back there could be a better treatment or even a cure.

The news that hairy is gone is a great light in the darkness for us.

This contrasting of light and darkness is in many places in our scriptures. There are a lot of variations on the theme, and recently I have been contemplating how some describe light that “scatters” the darkness. It’s an interesting concept, especially to those of us accustomed to electric lighting in our homes. When I switch on the lights in a dark room in the house, the darkness vanishes almost immediately. A few shadows might remain, but the darkness appears to flee from the light. On the occasion that we have no electricity and have to rely on candles, flashlights, or lanterns, the metaphor used by the writers of our scriptures who lived in a time before electric lighting makes more sense. Candlelight appears to push aside the darkness to make way for the light. Unless it’s a super bright candle, the room is usually still dark in some areas. Wherever the light shines, though, the darkness move out of the way. The light scatters the darkness.

This metaphor is pretty accurate for life. Sometimes we are in a room that’s pretty dark. It may not feel like there is much light at all. Yet, wherever the light shines, no matter how dim, the darkness does not win. That light might be hearing from an old friend or an unexpected smile from a stranger or the unwavering love of a spouse or a little reassuring God moment along the way. Whatever the source, these little candles of light in our ordinary lives illumine the dark rooms we all experience.

Around Christmastime this year, I heard a new song that has really stuck with me through the end of my chemo journey. It’s called “Christ Our Light Has Come” by Steve Angrisano and Curtis Stephan. (https://www.youtube.com/watch?v=456l42UcmKo) It’s very singable, and the lyrics are fantastic. Part of the way through the first verse the song tells us

True light has arrived to illumine our lives
So often beset by the darkness

My life was often beset by darkness in 2019. True light has arrived? When I stop and think about it, that’s what Christmas is all about. The composers point this out to us pretty clearly in the refrain that follows:

Cast aside all your fear and dread,
Come follow the light to Bethlehem.
The way of salvation revealed to all:
Christ, our light, has come.

Darkness doesn’t win. That’s what Christmas is about, and that’s what the whole Christian faith is about. Christ, our light, has come.

It is probably not by accident that this song found its way into both my ear and my heart in December and January this year. For several weeks, it kept popping up for me. When I first heard it, I played it for myself and found myself praying it quietly in the middle of my day. At a friend’s request, I later shared it for some of our small church community during our reflection on the Feast of Epiphany. A week later I felt moved to sing and play the song as I was leading the music at the closing Mass of our parish’s Men’s Retreat. I continued to hum it and sing it to myself for a number of weeks, well into January.

In the middle of January, I was scheduled to have my biopsy done. Going into the day, I was admittedly uncertain. I had many reasons to believe that the test would bring the good news that hairy was gone. Yet, on some level I was still doubtful. The cancer might still be there, and I had to brace for that possibility. The test was on a Monday, and we would get the results on a separate trip to Columbus the following Thursday. As has been our normal for the last year, the day was full of surprises. In the very early hours of Monday morning, my son woke up violently sick to his stomach. With him unable to go to preschool as planned, Meghann and I scrambled to adjust our plans as the sun rose. Talking through our very limited logistical options given the necessary driving time and the few hours remaining before my appointment, we decided that I would drive myself to Columbus, my mom would meet me there to stay with me, and Meghann would stay home with our sick son. Monday would just be a test day anyway. Thursday was the more important day. Meghann bravely agreed to the plan, even though it clearly hurt her not to be able to join me in Columbus.

Having a drive by myself that long-anticipated Monday morning gave me some time to converse with God. Hairy has enabled me to be better at these conversations, so I found myself just admitting to Him how I felt. I really hoped I was cancer-free. I wanted to hear that I was healthy. I needed help facing whatever I was going to find out later that week, and I really hoped that our son would be well enough that Meghann could come on Thursday. I was exhausted after 9 months of dealing with hairy. I just wanted everything to calm down a bit. After I had said my piece to God, I quite suddenly got a response back. It was that song again. Cast aside all your fear and dread. Christ, our light, has come.

Living with cancer is darkness. Having kids in the hospital is darkness too, as is taking care of sick family members, dealing with significant career stress, saying goodbye to loved ones, and a whole host of other things. Yet, we all have real hope. It’s the message of Christmas and the message of Christianity.

In our small corner of the world, there is less darkness than their was last year. I can now claim the title of “cancer survivor.” Light scatters the darkness and illumines our life. The darkness in our life doesn’t win.

Our Light has come.

Our Daily Bread

“God surprises us and often likes to mess up our appointment books; prepare for this without fear.” Pope Francis recently shared this wisdom with a group of newly ordained bishops, but he could have easily been telling our family the same thing. The last couple of months have had us constantly adapting our schedules and plans.

Nearly two months ago, both my sister and Meghann’s sister gave birth to baby girls within a day of each other. Much anticipated and much loved, both babies and their mothers are healthy and happy. We were able to visit my sister who lives nearby and meet her baby right away, but Meghann’s sister lives about an 8 hour drive from us. Being the planners that we are, months before the baby’s due date, Meghann and I had scheduled a road trip to meet her sister’s new baby. We had plotted out how we would do the trip with our own kids (road trips take longer with small children), and how we would time it for a few weeks after the baby was due to give the baby’s grandparents time to come and go without overwhelming the new parents. We were even able to nestle this conveniently between my treatments.

Around the time that both of the baby girls were born, a number of unanticipated things happened. My other sister (not the one that had the baby) was struck by an unusual medical disorder that stumped a number of local doctors until she finally saw a specialist at the Cleveland Clinic. My mother came down with a respiratory bug that turned into a months-long battle against wheezing and asthma. Meghann’s grandfather was hospitalized, then released to the nursing home, then hospitalized again, and then released to the nursing home again with a mixed set of health problems, many of which are related to the fact that he’s nearly 91 years old.

In our house, Meghann and I started trading weeks of being sick with a dash of our children’s sickness sprinkled in. First Meghann was hit with a cough that had her dragging for several days. At the same time, our son developed a raging ear infection that burst his ear drum in the middle of the night. The two of them recovered just in time for my next scheduled chemo session, which went well but dovetailed directly into me being sick for a week with both the cough that Meghann had just gotten over and my own addition of a high fever. In spite of hairy’s weakening of my body, I somehow managed to avoid a visit to the ER that week. This was largely thanks to my doctor’s careful care and an immune system that is starting to bounce back. As I finally recovered from my week on the couch, Meghann was hit with food poisoning that caused her gut problems for yet another week.

When you are the parent of small children and your spouse is sick or gone, sometimes surviving the grind of the day feels like a major accomplishment. If the kids made it out the door to school with packed lunches, snacks, and nap toys and I made it into work at a reasonable time in the morning and we ate something somewhat healthy for supper that night after work and school and the kids were bathed and in bed before it got too much past their bedtime and the kitchen was cleaned up with things ready for the next day before it was past my bedtime, it was a very successful day. If one or more of those things didn’t happen (say I forgot my daughter’s favorite baby doll when I dropped her off at school and still got to work 30 minutes later than I wanted to and ended up going through the drive-through at Skyline on the way home to avoid having to cook and clean-up), success may be just that we managed to survive the day. The grind of days like these make me extra thankful that I have a wife to share in parenting our wonderful and exhausting small children. I have great admiration for all single parents, and I often wonder how they can do it by themselves.

In this midst of these health challenges, life threw a few other curve balls in our direction. In early September our daughter moved from the baby classroom to the toddler classroom at her school. Though that transition and new routine is often a challenge for both the kid and the parents, true to her very confident 16-month-old personality, she picked up her own lunch box, marched into the new classroom, and didn’t look back. The same week that she moved classrooms and I came down with my multi-day fever, a major leadership team change took place in my office. The change was a shock for a number of members of our small and tight-knit team, and somehow I was just healthy enough to be present to help calm the rocking boat that was our company at the time.

On top of all of this, my treatments continued every other Friday, largely wiping out the following weekend as I recovered from the chemo medicines in my body.

The chaos and health challenges of early September caused us to postpone our carefully thought-out road trip. We also were forced to adapt to unanticipated days out of the office, missed choir practices at church, and rescheduled or canceled client meetings. Most evenings were spent doing the bare minimum necessary to cleanup, pay the bills, and prepare for the next day before going to bed. We continually faced the disappointments and frustrations that come from rescheduling and postponing those fun plans we had again.

Yet, through it all, God was and is here.

There has been much good in this time. We have two healthy little girls added to our family. We were able to reschedule and take that 8 hour road trip with the kids. My family’s health is improving. My kids continue to grow and learn and amaze me. Meghann’s business is doing well, and my work team is doing great. We were able to squeeze in a date night. Our friends and family have continued to remind us how loved we are and how big of a support community we have.

Also, my hairy cell is getting better, and the treatments appear to be working. My immune systems is recovering, and I feel a great deal of hope that we will get to the other side of this.

Through the trials of the last couple of months, I have found myself unconsciously repeating the prayer “Give us this day our daily bread.” We humans have very little control over most things in our life, and that can be very stressful. Yet our faith gives us the ability to counteract that stress by teaching us to live in the present. Living through a period like the last few months has been a good reminder of that. God gives us what we need to get us through each day, even when that day is hard. No matter how worn out we are at the end of the day, we can go to sleep at night with confident expectation that we will have what we need again tomorrow.

I won’t pretend that it has been easy to live in the present in the last couple of months. However, life has compelled us to live this way, trusting each day in our daily bread. As usual, God is using times like this to make us into better people. That shouldn’t surprise me at this point in my life, but His unceasing quest to make me better still catches me off-guard. For that, I am thankful.

Give us this day our daily bread.

The Dogwood Tree

This summer we bought a small tree to plant in our yard. We had been wanting to get something to fill in a gap at the back of our property. Being the environmentally-conscious person that I am, I wanted to make sure to get a native plant. Meghann, who is better than me at making sure our house looks nice, also reminded me of the need to make sure that whatever we bought looked nice and ideally had pretty flowers at some point during the year. After looking at a few options that met our criteria, we settled on a dogwood tree. We bought one that was about a foot tall when we got it. Any young tree is an investment in the future, and at a height much shorter than our 1 year old daughter, this one was no exception.

As we were getting ready to plant it, Meghann and I started to discuss staking up the tree. We hadn’t ever bought a young tree like this before, but it seemed like it was probably the right thing to do to such a fragile little plant. Both of us agreed that this seemed like conventional wisdom though neither of us could say exactly who had taught us this. Isn’t that just what you’re supposed to do? Our neighbor must certainly have thought so since he had staked his two small trees that he had planted a month earlier.

Before I planted the tree, I decided to do a little research on tree staking. I was surprised to learn that unless you are planting a tall, skinny, top-heavy tree, staking is not necessary. In fact, it can actually hinder the tree’s growth. As trees grow, rocking freely in the wind causes them to develop deep, strong roots. Preventing a tree from being moved by the wind hinders this root growth and ultimately hurts the overall growth of the plant.

So to give our little tree the best possible chance to succeed in life, I planted it without any stake to hold it. As I did so, I began to contemplate the spiritual analogy of this. We all are like a growing tree. When the wind and storms come, our world gets shaken up, sometimes significantly. Yet, somehow this rocking in the breeze seems to result in us growing deeper and stronger roots. We hold onto the things that are most important to us – our faith, family, friends – and prioritize what is most important to spend our time doing. We start to view our life through a different, bigger lens. We get better at empathizing with other people around us in the midst of their own stormy periods of life. Most of all, we develop a stronger foundation to help us face the next wind or storm that will come our way.

Hairy cell leukemia has blown our family’s little tree around significantly this year. Yet through the storm it has brought to our life, I trust that we are all developing deeper roots in God and in one another. May God continue to help us all to grow in the midst of the winds that blow us.

Adèle

Catholic fascination with the saints is perplexing to many people. Even I, a cradle Catholic, have often found it a bit hard to understand. Shouldn’t we pray to God, not people?

Last November our small church community gathered during the week of the Feast of All Saints, and we had a timely discussion on the topic of the saints. Thankfully for us, our well-educated pastor led the session, and I walked away from it finally having cleared up much of the confusion in my head about the saints. Saints are simply people – ordinary people – who are in Heaven with God. Beatified Saints, like St. Francis of Assisi or St. Augustine, are people the church formally recognizes as being in Heaven, but anyone in Heaven is a saint. Because they are with God, they are able to communicate with us in the same kind of way that God often does – in those small, quiet, occasional but unmistakable voices. Anyone in Heaven, whether recognized as a beatified Saint or not, can participate in this communication (so I didn’t imagine hearing Grandma talk to me this spring). Most importantly, though, is that even though they are in Heaven, the saints are still in community with us. That is, they pray with us and for us. We don’t pray to saints; we pray with saints. Asking a saint to pray for you and with you is really no different than asking a friend or family member for the same thing.

In this discussion, our pastor also shared that sometimes people feel drawn to a particular saint. When that happens, it is often because that saint is adopting you as a friend and prayer companion. In November I thought the idea of being adopted by a saint sounded neat, but it was not something I could personally relate to.

A couple of months later, I was at Bergamo Center for our parish’s annual Men’s Retreat. Bergamo is operated by the Marianists, the order of priests, brothers, sisters, and laity who also operate the University of Dayton, my college alma mater. Because of my time at UD, I have always been partial to the Marianists (and not just because I love UD basketball), but I have not had much contact with any of them since I graduated over a decade ago. I belong to a diocesan parish now that was originally founded by the Franciscans, and the parish retreat at Bergamo really has nothing to do with the Marianists other than renting their retreat space.

While on a break between retreat talks, I went for a walk through the halls of Bergamo. I stopped to look at a little display of many things Marianist – books, postcards, brochures and icons of the saintly founders of the order. As I stood there, I found myself drawn to the icons of Blessed Adèle de Batz de Trenquelléon, the founder of the Marianist sisters. It was an an unusual moment, but as I looked at Adèle’s picture, I felt like she was calling to me. I wasn’t quite sure how to react, so I stood there another moment, picked up a couple of prayer cards with her picture on them, and continued on my walk, pondering what had just happened. At the time, I told no one about the experience.

After I got home from the retreat weekend, I shared the experience with Meghann. I felt almost embarrassed to tell her and admitted to her that I wasn’t sure if I was crazy. Meghann did not think what I told her was silly or crazy at all; she seemed to think it was totally reasonable to hear me say that I felt like a saint was calling to me. With this encouragement, I put one of the Adèle prayer cards in my wallet to always keep close to me, and the other one on my dresser so that I could see it when I woke up and before I went to sleep. I felt less crazy after talking to Meghann about it, but I was still a bit perplexed. When I have heard stories of ordinary people interacting with saints, they tend to be miracle cures or dramatic, unexplainable Heavenly interventions. I hoped to myself that I would never need something like that in my life and tried to make myself comfortable with the fact that I had been adopted by a saint. For whatever reason, that was not an easy thing for me to accept.

I did take some time to read a little about Adèle after this, though. While there are some very obvious and striking differences between the two of us (a married man is clearly not qualified to found an order of nuns), I found that Adèle and I have some things in common. Small church community is something that we both have spent fruitful time doing. Writing about faith has been important to both of us. Social justice issues are a priority. Something I hoped we would never have in common as I read about her, though, was getting seriously sick in our 30’s as had happened in her life.

Then came April 17. As we grappled with the news that I had cancer, I found myself thinking of Adèle and beginning to suspect why I had met her a few months before. God had sent me a saintly companion to help me face hairy cell. I was going to need her prayers alongside mine and those of my family and friends on earth as we walked this cancer journey. I wasn’t crazy, and there was a reason I felt like she was calling to me months before. It was a brief moment of hope in the midst of reeling from the news of the day.

As spring became summer and treatment loomed on the horizon, I fell into the habit of greeting Adèle whenever I walked past her picture on my dresser. At first it was either a “hey, Adèle, how’s it going?” or a “Adèle, please pray for us as we face this cancer.” Before long, I found myself not just conversing about my cancer but also asking her to pray with me about other people in my life who needed it – my pregnant sister and sister-in-law and their unborn babies, my coworkers facing difficult family challenges, victims of violence, immigrant families being treated badly by our government – whatever was on my heart at the moment. Adèle became a reliable friend that I knew would always take these things seriously and pray for them in a much better way than I am able.

To be clear, conversation with Adèle did not replace conversation with God; it augmented it.

When treatment began, Meghann and I added asking Adèle for her help to our pre-treatment prayer ritual. It was nothing major, but just a simple “Blessed Adèle, pray for us.” Even then, I knew she was.

In my second treatment session, I had a reaction to one of the medicines I was receiving that caused violent chills and a fever. Even after the nurses got the chills stopped and the fever under control, I felt very lousy for a long while. The night after I was awake much of the night with medicine-caused insomnia accented with nausea and vomiting. It was a rough night to say the least. As I laid on the couch that night feeling lousy while my family slept upstairs, I suddenly had a moment that felt like a friend was rubbing my right shoulder, telling me everything would be ok. It was a reassuring and calming moment in a difficult night. Though I didn’t see anyone, the familiar presence felt very real. “Thanks, Adèle,” I said. After that, I was able to finally go to sleep.

If you think this story seems unlikely or downright unbelievable as you read it, I wouldn’t fault you. I have found the whole thing unbelievable myself at times over the last 8 months. Am I really interacting with a saint, or is my mind making this up? Is it really possible to have a conversation with someone who died 150 years before I was born? When I start to wonder these things for too long, God seems to say “who are you to say what I can and can’t do? If I want to send a saint to pray with you, I can do that.”

On my stronger faith days, I am thankful to God for the special grace to have gained a heavenly friend that I never knew on earth. On my days of questioning and doubting, I just try to to talk to God and say “hi” to Adèle while I’m at it.

I don’t fully understand why the founder of the Daughters of Mary Immaculate would want to adopt me as a friend, but I believe that she has. I am grateful for a companion on this journey who is clearly close to God and who wants to pray for me and my family and friends. I deeply hope that I do not become one of those saint stories where I need to ask for a miracle cure from God with her intercession on my behalf (right now treatments are going well, so for now it does not appear that I will have to). I know that I will one day again face hairy cell disease, as it is a chronic and incurable disease, but I hope that Adèle will be there next time too. Perhaps this friendship will lead to other things too, unrelated to cancer, that I haven’t even thought about yet. I don’t know. Hopefully, God will continue to give me the grace to simply be thankful for the prayer companion and to continue to converse with her as we both pray together to Him. So thank you, God, for sending me a saint friend, and thank you, Adèle, for adopting me.

Blessed Adèle, pray for us.

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.