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.