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.

IMG_20170811_162101_015

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.

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.”

Did you follow my Dad blog yet?

IMG_3367