Five Years After My Cancer Diagnosis

January 2, 2015. That’s five years ago, but I’ll never forget being told I had cancer.

I immediately got light-headed and felt like I was going to pass out. I always thought people fainting from receiving bad news was an exaggeration in movies and TV shows, but there I was, suddenly covered in a cold sweat over every inch of my suddenly cancerous body.

My wife of almost 4 months put her arm around me for support–a posture she would maintain physically, emotionally and psychologically for the next six months, as we celebrated our first married Valentine’s Day in a hospital room and marched together through six long months of chemotherapy.

Hodgkin’s Lymphoma is the good kind of cancer, a fact I am forever grateful for, especially as I look back on the experience now and await the all clear “cured” status of five years’ remission this summer. But cancer is cancer and chemo is chemo. It was devastating and difficult, while simultaneously sanctifying and transformative. I’m a survivor now, and I claim that title with a cocktail of pride and humility at the company it puts me in.

How will I talk about this experience with my kids? How will I explain to them the love that I felt from family, friends and strangers who supported me from near and far, in physical and metaphysical ways? I want them to understand the importance of being there for people when life is unexpectedly turned upside down, even if being there just means sending a text message or a card. I want them to understand the real and awesome power of prayer. I want them to believe that bad things can be used to illuminate the best things, and that God is present in all of it. I want them to understand that I believe I was spared from this disease so that they could be born, and so that I would be prepared to be a better father for them.

I want them to know that I am grateful for this experience in ways that I never would have thought remotely possible as I sat in a sterile examination room and almost hit the deck at the news of my diagnosis.

I’m not who I was before I had cancer, and I never will be again. In most of the ways that matter, I believe that’s a good thing.

Please say a prayer tonight for everyone who is battling cancer, those who have conquered it and those who died bravely in the fight. Say another prayer for all the heroic caretakers of cancer patients. If you know someone currently battling the disease, please send them a message of support right now. You don’t know how much it will mean to them, but I do.

#DownWithLumpy

Three Years After Chemo: A Look Back at the Toughest 6 Months of my Life

It’s almost the third anniversary of the day I started chemotherapy. It has been three years since chemo went from being something that my grandfather did when he was losing his life to lung cancer…to being something that I had to do to save my own.

It lasted for six months.

When I think about the enormity of that experience and its defining effect on my biography, it’s hard to believe that it can be fully encapsulated in a short hyphen between January 2015 and July 2015. That’s only half a year. That’s shorter than a pregnancy.

But when you’re pumping poison into your veins on a bi-weekly basis, you start to measure time differently.

You’re measuring the time between lying on the floor on a mattress in the living room and going back to lie down in your bed. (Healthy folks call that a “day.”) You’re measuring the time between weekly oncologist visits. You’re measuring the time between meals you’re forcing yourself to eat. You’re measuring the time between when you start to feel a little bit better and when you have to go back for more poison.

I was dealt the cruel hand of starting out with a treatment plan calling for three months of chemo that suddenly evolved into six months somewhere around the middle of the first three. Time seems to move a lot slower when you think you’re halfway done with something and it turns out that you’re further back than where you were when you started.

When other people find out you had chemo, you get instant credibility. You must be so strong. So resilient. It’s unimaginable having to go through that. They can’t believe you actually did it.

Chemo 10 of 12. No eyebrows is a great look.

The distance from the chemo experience and the relative lack of reoccurence scares in its wake has led me to sometimes rewrite the narrative in my mind. I think back to how it “wasn’t really that bad” and that maybe I don’t even deserve to claim the vaunted title of cancer survivor, with all its rights and privileges and instant respect. There are so many others who have it so much worse and are fighting so much harder. But that’s no way to honor my own struggle or the struggle of anyone who battles cancer. Chemo is chemo. We were all worthy opponents and we are now blessed and thankful survivors.

But heroism and strength aren’t exhibited simply by doing something that you’re forced to do. It’s the way you endure it that defines you, and there’s something about cancer — for all its wickedness — that seems to bring out the best in its victims.

You are a cancer survivor long before you can actually claim to have survived cancer. Chemo puts you in survival mode.

No matter how much time has passed, there are things about chemo that I will never forget. Dreading the appointment all morning. My wife coming home early from work to join me for the treatment. Putting the chemo parking pass on our dashboard so we could park right by the hospital door. The distinct smell of the waiting room, where insipid daytime television droned on, oblivious to all the sick and worried people watching there. Being the youngest person — by a mile — in that waiting room.

Accessing my port for my first chemo treatment.

Unbuttoning the first few buttons of my shirt so the nurse could access my port for the day. The smell of the disinfectant solution applied to my port before they inserted the needle. The unpleasant pressure and pinch of the needle entering the foreign lump on my chest just above my heart. Watching the vial of blood fill up and knowing I wouldn’t get woozy like I did when they drew from my arm. Getting my port flushed and cramming animal crackers into my mouth to hide the taste of the saline.

Settling into our chemo room and putting the pink pillow behind my head on the less-than-comfortable recliner. Debating whether we would get the nice nurse or the cranky nurse. Getting the cranky nurse. The first round of painkillers and anti-nausea medication that sometimes had weird side effects that almost made me nauseous. The impossible-to-fight feeling of drowsiness that would overtake me. Drifting in and out of a weird sleep to the sounds of the “Arrested Development” episode that we watched on my laptop as a distraction.

Awaking more fully when it was time for the nurse to switch out the IV bag. Getting up to pee and dragging the IV stand behind me. The nauseating metallic taste of the “red devil” component of chemo that the nurse had to manually and all-too-slowly push into my IV line. Desperately munching more animal crackers and wondering how I got to this point and how I could possibly keep doing this.

Enduring the short drive home in a semi-nauseated, completely exhausted state. Collapsing into bed without knowing what time it was or what time it would be when I awoke. Finally waking up and feeling a tad more human. Hearing my wife making dinner in the kitchen, but knowing I wouldn’t really want to eat any of it.

I did that 12 times. I’m not sure if that sounds like a lot or a little, but it certainly felt like enough.

Now that I’m healthy, it’s easy to sometimes feel a disconnect from the person who went through all of that, even though it changed me forever in so many ways. I see the fading scar on my neck from my surgery and on my chest from my port, and I feel like someone who was abducted by aliens. In this case, the bodysnatcher was cancer. The scars help me know it wasn’t just a dream.

There was undeniably so much good that came out of this experience, and I think of that often. But when I reach the anniversary of various stages of my cancer fight, it’s important for me to remind myself of these grittier details and memories.

“Remission” too often means being remiss in my pledge to never take my good health for granted again.

And neither should you.

On Two Years of Remission

They need to invent a new tense for talking about cancer.

Tense is a good word for it. It’s a tense tense. It’s an intense tense. It’s a past tense and a present tense. It’s an imperfect tense.

I had cancer. It’s gone now, by the grace of God. No evidence of disease. That’s the past tense.

But it’s never forgotten. Every time I get out of the shower, I see the fading scars on my chest and neck, and I remember. Every time something is out of the ordinary with my health—an innocuous cyst on my face or a prolonged mouth sore or an enlarged gland in my neck—I feel a creeping uncertainty and fear. Every time I hear a story about someone else who is receiving treatment or has lost the battle, I feel an overwhelming gratitude for the blessing of my continued life and my two years of remission.

That’s all present tense. This is how I live with cancer even after the cancer is gone: I remember the past. I value the present. And sometimes I fear for the future. No matter how much time goes by, a part of me will always be living cancer.

Cancer is an epic disruption. It disrupts your immune system and your plans. It disrupts your appetite and your mood. It disrupts your work and your play. It disrupts your priorities and your prayers. It disrupts the lives of everyone around you. It disrupted my life as a newlywed—first haunting me on my honeymoon and ultimately shaping the first year of my marriage.

It’s still disrupting me. First every three months, then every six months and now once a year, cancer bursts on the scene in the form of a CT scan. As I enter the machine, I’m instructed to hold my breath in order to get a clear reading. I don’t fully exhale until I get the results back days later, and I can be assured that the cancer itself remains in the past tense.

Getting a fully clear scan seems to be a struggle for me, as tiny ambiguities always seem to pop up, pulling me back into present tense. One time it was mysterious activity in my throat that could have been a cold or could have been something else. It was a cold. Another time it was an enlarged spleen that could have been something else but turned out to just be my larger-than-average spleen. For my most recent annual scan, the ambiguity still remains too tensely ambiguous for my tastes. A couple lymph nodes in my neck measured at 3.1 mm instead of within the safety of the 3.0 mark. One-tenth of a millimeter is enough to potentially blur the lines between past and present tense.

It was hard not to think about that while I waited for the doctor’s call with the results. When it comes to getting results from a doctor, voicemail is the enemy of good news. I missed his first call—both on my cell phone and my office phone—and he left a voicemail saying that he wanted to discuss my results. No rush, just wanted to chat about them. I missed his second call and had to wait a full 24 hours before I would hear from him again. Those 24 hours were spent in frenzied future tense, playing out terrifying scenarios in my mind and rhetorically asking questions of “what if?” and “what then?” and “why me?” and “how come?”

My doctor assures me that everything is fine, that my blood work is pristine and that the one-tenth of a millimeter could have numerous non-cancerous causes. I’m choosing to believe him. I recently had the aforementioned innocuous cyst removed from the side of my head. The lymph nodes could be reacting to that. I don’t feel like I’ve had a cold or illness, but my oncologist said I could be fighting something off and the lymph nodes were helping. He also said that if it was cancer, I would have other symptoms and the nodes probably would have grown a lot more than one-tenth of a millimeter in the year’s time between my scans. He said he will order another scan of my neck region when I see him for my usual checkup in four months, and we’ll see what that shows.

But today is the anniversary of my remission and there is still technically no evidence of disease. So I want to celebrate in the present tense. Cancer made me a better person. It made me more empathetic to the suffering of others—especially the invisible suffering that the stranger next to you might be experiencing before their hair falls out from chemo. I’m more attuned to the physical suffering that comes with side effects from treatment as well as the mental and emotional suffering that comes from being diagnosed with a terrible disease and all the side effects of uncertainty. I proudly wear the banner of a cancer survivor, but I know that so many others have endured or succumbed to so much worse.

I am grateful every day for the fact that post-cancer life has returned me not just to normalcy but frequently to unqualified bliss. I’m married to a beautiful woman who lifted me up and made me smile during the most difficult moments of my life. We together conquered a challenge that most newly married couples cannot imagine, and

enduring that experience together has reduced many of the usual mountains of marriage to mere molehills.  We are now blessed with a beautiful daughter who is changing our lives in new ways every day and who represents a future for our family that is filled with boundless love and endless possibility.

Cancer will always be a part of my history and reality. But despite the wounds of the past and occasional fears for the future, the greatest takeaway from my cancer experience will always be a better understanding of the gift of the present.

Combating My Gratitude Deficit

Why is gratitude so fleeting?

This thought always seems to not-so-coincidentally occur to me around the time of my once-every-four-months oncologist checkups. How sad that it takes the specter of cancer to make me once again realize how truly blessed I am.

The timing of this week’s appointment was particularly compelling, as Lumpy was already back on my mind for a variety of reasons.

First of all, I had just read the story of Amy Krouse Rosenthal, a Chicago area writer who knew she was dying of ovarian cancer and penned a touching love letter to her soon-to-be-widowed husband for Valentine’s Day in the form of an online dating profile for any woman who would be lucky enough to be with him after she had passed. She was diagnosed in September 2015 and died this week at the age of 51. As always, epically sad stories like this one leave me reeling with grateful thoughts about the fact that my Lumpy was the beatable kind. By simply adding “non-” to the beginning of my Hodgkin’s diagnosis, it could have easily gone another way. Why was I chosen to live?

Secondly, I received an email last week from a new health site called Bright Bod that is seeking to interview patients of various cancers and post their answers to experiential questions online as a somewhat crowd-sourced version of Web MD. Always eager to share my cancer experience in any way that would be helpful to Lumpy’s future victims, I jumped at the chance and walked through my cancer fight via a 45-minute Skype interview. (Incidentally, if there are any other cancer patients reading this, I can send you the site’s contact info if you would like to participate…they will pay you for your time!) Going over the timeline and symptoms and side effects of treatment, I realized how infrequently I think about it on a daily basis. Being a cancer survivor will always be a big part of my identity, but my full return to good health more often than not makes it a footnote instead of a headline. What a blessing.

Thirdly, a few weeks ago a friend texted me asking for prayers for a couple who found out they were pregnant…and then found out the mother has Hodgkin’s. I have written many blog posts here and elsewhere chronicling the joys and sorrows of both cancer and pregnancy—but going through both of those medical events simultaneously is simply unfathomable to me. Please stop reading this for a moment and offer a prayer for that couple and their baby. They must be a very special husband and wife to be given such a tremendous trial.

The final reminder that my gratitudinal attitude could use some adjusting came from looking back at one of my own cancer posts. Since Facebook now delivers a daily “This Is Your Life” digest of what I was doing on this day in previous years, I am able to relive the 2015 Lumpy battle as it recedes into the social media version of the history of my life. I wrote this post almost exactly two years ago, as I struggled with neutropenic fever and an unwillingness to endure more chemo treatments that I knew would make me feel even worse. I was reading the comments on the post and saw one from a woman whose blog site was titled “Livingly Dying.” I clicked over to the site and saw that she had indeed passed away on June 10, 2015—less than three months after commenting on my blog. Recent posts were dedicated to memorial services and a charitable event in her honor. The blog lives on as a testament to her more than four-year fight against ovarian cancer. Once again, it becomes impossible not to be extraordinarily grateful for my current situation and rather ashamed of my frequent lack of gratitude.

Now you might say, “Matt, don’t be so hard on yourself.” But why shouldn’t I start every day with a prayer of gratitude that I am still alive? My ability to write this post right now is a product of early detection, modern medicine and the support and prayers of everyone in my life. I am no more worthy of getting to live my life, love my wife and raise my children than any of the countless people who have succumbed to terminal versions of the disease. And neither are you, my cancer-free friend.

But it’s so hard to remember all of this during the day-to-day frustrations of daily life that nevertheless are still moments of a life that we are blessed to continue living! We should live in full and constant thanksgiving for all the awesomeness in our lives, and seek out joy even in the beautifully mundane moments. I’m striving to shed the skin of entitled indifference that starts building up every time I get another all-clear from my doctor. I got that call today. I’m four healthy months closer to total remission and a declaration of “cured.”

But I know the real cure is unmitigated gratitude, and I need to increase my dosage.

One Year of Remissioning

It was one year ago today that I got the news I had been waiting six months to hear. My cancer was in remission. While I won’t be considered by the medical community to be “cured” until August 2020, hearing that there was “no evidence of disease” still meant to me that I had conquered the most grueling personal challenge I had ever faced. It meant an end to weekly doctor’s appointments and blood tests. It meant a return to work and exercise and ramping back up to full strength. It meant getting my eyebrows back and at least a little more hair on my head. It meant that I was meant to face down cancer and live, when so many others were not so blessed.

It’s only one year later, but the world looks so much different to me today. The experience of fighting cancer changed me irrevocably and tremendously, but I didn’t expect my life to change all over again in my first year of remission.

Remission.

Now I’m no linguistic scholar, but I don’t think the parts of that word sound like they have anything to do with overcoming an illness. Nevertheless, it’s a rather apt word for how I’ve spent much of the past year.

I’ve been re-missioning.

In fact, I’m on a completely new and wonderful mission now–a life change that was almost as unexpected as my initial cancer diagnosis, but a billion times more joyful.

As I type this post, my daughter Madeline is lying next to me in her rock ‘n play sleeper, baby-grunting and beginning to stir as she prepares to wake up for her eighth meal of the day. She turned three weeks old yesterday, and she’s the most perfect creation I’ve ever seen.

I can’t help but consider her to be a miracle–and I know that all children are miracles–but Maddie counts doubly so. Before I embarked on my treatment journey, three different doctors told me that chemotherapy had rendered greater men than me sterile, so I should probably make plans for my future fertility (and defy Catholic teaching on the subject). Theresa and I forged ahead in faith–trusting God’s plan for our family, even if that meant that Lumpy would make us a permanent party of two. When I received my remission news last year, the oncologist told us that even if we could get pregnant, we most likely wouldn’t be able to do so for a year and shouldn’t really even try until then. I guess that would be right now.

But just as God surprised us by making 2015 the Year of the Lump, he surprised us again by making 2016 the Year of the Bump. With that positive pregnancy test last December, we were instantly re-missioned.

I won’t pretend that Lumpy didn’t make a few cameo appearances in the past year. He came back like clockwork every three months when it was time for another scan and randomly haunted my psyche with worst-case scenarios: What if the cancer came back? What if I got sick after the baby came? What if the baby was sick? Is that another lump in my neck?

Fortunately none of these dramas ever played out in reality. My latest scan last week appears to be my cleanest yet. I’ve found a new oncologist who actually seems to care a lot about my health and who understands the importance of bedside manner when you’re dealing with cancer. Theresa gave birth to Maddie with no complications (read the epic tale!) and Maddie is as healthy as can be.

This entire pregnancy and year of remission has been filled with “What did I do to deserve this?” moments of gratitude–spawned from an experience that normally poses that question in the other direction. I know that I wouldn’t be here if I hadn’t been there, so I can’t help but look back at the marvelous timing of all these staggering life events with wonder and gratitude.

Perhaps it’s fitting that this is my 100th post on this blog–a blog that I started simply to chronicle the experience of my 30s and all the big moments I presumed would be heading my way in that decade. If I could send these 100 posts to my 29-year-old self, I wonder what he would make of it. Would he be afraid? Proud? Shocked? Perhaps he’d be most surprised that I actually kept it up.

As I turn 34 in three months, it would be tempting to hope that the latter half of my 30s is more predictable than the former. But these years have taught me the value of change, the importance of faith and the rewards of following a path that sometimes isn’t clear until you’re looking back at where you came from–and suddenly you’re happier than you’ve ever been before.