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

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.

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.

 

Is it Time to Find a New Oncologist?

As I type this tonight–about two months from my one-year No Evidence of Disease remission anniversary–I find the thought almost comical: Why would I switch oncologists now? After all, I’ve already endured 12 rounds of chemo on my current doctor’s watch, put up with his idiosyncratic bedside manner, his maddening lack of clarity and availability, some mistakes in treatment and his Groundhog Day-like inability to remember the details of my case between visits.

After reading that last sentence, perhaps you’re wondering why I stuck with him in the first place. Well, the answer is largely because the hospital was conveniently located minutes from my house and my oncologist was supposed to be administering chemotherapy according to the marching orders of a highly respected lymphoma doctor at the University of Chicago who provided my second opinion and course of treatment. That doctor assured me that chemotherapy is chemotherapy no matter where you get it, and it seemed a lot smarter to get it five minutes from my house than to brave rush hour traffic to-and-from Hyde Park once a week for chemo sessions or checkups.

But I’m assuming that while the ABVD chemotherapy poisons are the same everywhere, the level of care from your oncologist can differ greatly from practice to practice. And in that department, my oncologist could surely use some…practice.

So what was the straw that broke the camel’s back? It happened earlier today. My wife and I had recently been chatting about how I am due for another PET or CT scan, as my oncologist had said he wanted me to get one every three months for the first year. For each of these scans, we have had to call his office to see if he still wanted me to get one and had to connect with him in order to get the scan ordered. (Is this normal? Or is the office supposed to call you to schedule your scans? I have no frame of reference for this beyond my dentist and my eye doctor, who always call or send a postcard when I’m due for some maintenance. Fellow cancer patients and caregivers: what has been your experience?)

Completing these scans is always a stressful experience for me–both because I hate getting stuck with needles and also because I always have a fear in the back of my mind that the scan won’t be clear and I’ll need more chemo or radiation or some other form of cancer-fighting torture. At the appointments to get the results of my three-month and six-month scans, it was clear that my oncologist had not even looked at the results before entering the room, which left my wife and I quivering in fear as he read them over in our presence. After the first scan, there was some ambiguity in my throat that required me to go back to the ENT who originally diagnosed my cancer. But my doc hadn’t seen this before I was in the room, so we got to watch him process it and ask me questions about my general health before he told us what was going on. It was terrible.

After my six-month scan, he reacted incredibly positively to the completely clear scan as he read it for the first time in front of us…because he thought this was my first scan after remission. When I complained about having to drink a disgusting contrast liquid before the scan, he told me that they didn’t need an abdominal scan because my lymphoma was in my neck, so I wouldn’t have to do that for any future scans. That’s nice, but we still got charged for the unnecessary abdominal scan that was clearly ordered because he wasn’t paying enough attention and didn’t bother to examine the details of my case.

But the back-breaking straw came today, when my wife once again called his office to find out if he still wanted me to get a nine-month scan and to get it scheduled. The office left a voicemail saying that we were supposed to have come back for a checkup after two months (which was never suggested to us on our last visit and had not previously been the protocol) and that my doc wanted me to get a scan of my chest, abdomen and pelvis.

Even casual readers of my cancer adventure will remember that my cancer presented as an enlarged lymph node in my neck. SO WHY IS HE NOW REQUESTING A SCAN OF EVERY LOCATION EXCEPT THE PLACE WHERE THE CANCER WAS?

I’m sorry. I’ll calm down. And turn off caps lock.

A quick scan of his waiting room tells me that he sees a lot of patients and that some of his patients probably have lymphoma. But I also know that I am probably one of the only ones who is under 35 and therefore perhaps a little more memorable than a lot of the older cancer patients he sees. But even if he couldn’t exactly remember the details of my case, shouldn’t he look at my chart a bit more carefully before ordering incredibly expensive scans that are meant to ensure that the cancer hasn’t returned?

So this is why I kind of want a new oncologist now. But I’m not sure that’s even an option for me. Do oncologists take on patients who are in remission and just come in for tuneup scans?

In the 17 months since Lumpy first entered my life, I have tried to be a resource for anyone who is dealing with similar health issues. I’ve tried to meticulously catalog my experiences in the hopes that it could bring comfort or knowledge or solidarity to others who find themselves fighting their own Lumpy.

But tonight I find myself somewhat frustrated and in need of advice. If you are reading this and have any experience with professional medicine or cancer treatment, I would love your feedback. Leave a comment or send me a message (roundingthirty at gmail dot com), and I would be very grateful for your insights.

Despite my frustration, I remain in good health–although perhaps gaining a bit too much pregnancy weight in solidarity with my pregnant wife–and richly blessed beyond measure. My oncologist and his staff did take good care of me throughout my treatment, but this latest development just feels like a logical breaking point, if it’s possible to switch to another doctor. Regardless of any of this, I feel so sure that all of the experiences that came from my cancer battle were oddly dressed blessings from God that fit perfectly into His plan and have prepared me for new and exciting challenges to come. Thank you for reading this and for all of your support!

News Worth Sharing

Being busy with a pregnancy and finishing up another quarter of teaching and taking a vacation and concentrating most of my efforts on Dad Has A Blog, I have been a bit remiss in updating this one.

Incidentally, if you aren’t already subscribed to or otherwise following that blog, you should probably click here and fill out the subscription form to rectify that!

If you haven’t been following that blog or any of the other places where I shared the announcement, you might have missed the news that we found out our baby is going to be a girl! You can read more of my thoughts on that in this post, but also watch the video below to see how we revealed the gender to my family and some of Theresa’s family who were in town this past weekend.

Theresa and I also just returned from our babymoon to Arizona (full post on the subject coming soon to a dad blog near you!), where we had a delightful time taking in a Cubs spring training game, seeing the Grand Canyon, eating at a non-Illinois Portillo’s, hiking some scenic trails in Sedona, and just generally devouring the 75-degree weather and the ability to walk around in a t-shirt and eat meals outside. It was a fantastic way to relax and enjoy each other’s company, while also being able to talk a lot about the new person who will be joining our lives in less than five months. We even spent some time by the pool reading our respective father-and-mother-to-be books.

While in Arizona, I also had a weird health-related issue, as a lymph node in my neck swelled up right before we left for our trip. It was the same lymph node that always used to swell up whenever I got sick with a cold in my pre-Lumpy days, so I didn’t think much of it. A few days into our vacation however, a giant sore formed on my right cheek–which looked a lot like a really bad acne pimple without any kind of head–and the right side of my face swelled up to an alarming degree. I didn’t have a fever or any other symptoms, and I was just two weeks away from a completely clean CT scan, so I did my best to presume it was just something wacky and unrelated to Lumpy. The swelling started to go down after a few days and the sore scabbed over, so it just looked like a really ugly flesh wound. Very attractive.

I went to see my oncologist when we returned to Chicago on Friday, and he recommended I get yet another CT scan and put me on antibiotics. Last night I got the scan (only two attempts needed to insert the IV this time…they’re getting better!) and had a restless night of contemplating my mortality while I tried to sleep. I have to believe that some of this anxiety is caused by the presence of the baby resting comfortably in utero next to me. If I’m being honest, the specter of Lumpy is still much closer in the rearview mirror than I would like it to be, given this wonderful new development. I need to trust in God’s plan for my life and know that He won’t give me anything I can’t handle. I think I was just a little discouraged by having such a random and strange issue develop on my neck/face so soon after a supposedly clear scan. What gives?

Today I went to my oncologist to find out if anything was giving, and I am happy to report that nothing is. Yesterday’s scan was as clear as the previous scan, so the doc said this must have just been some freak infection that will continue to heal itself with the antibiotics, and said that the big reaction is probably just a sign that my immune system is still a bit compromised from the chemo–even though I’ve been done with chemo since last July.

I can’t express the relief I felt from this lack of a diagnosis, and I hope it will be enough to finally put my mind at ease for a while. I have two other people’s health to concentrate on for the next…well, forever…and I want to start fully focusing my energy on that and stop looking over my shoulder for cancer shadows. It would also be nice if random freak health-related occurrences didn’t pop up for a while…

All in all, I feel so blessed to have the clean bill of health that I do, and to be having this miracle baby with a wife I love with my whole heart. To quote the wise sage Keith Urban, “There ain’t no doubt that God’s been good to me.”

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