blessed – 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.

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.