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.
It’s been more than three months since the glorious PET scan declaring my remission, so it’s high time I provided a Lumpdate on recent developments.
Like every good newly minted cancer survivor, I returned to the hospital last month for my three-month PET scan checkup. That’s lifetime PET scan number four for those of you scoring at home.
The procedure is old hat to me by now, but never fails to include a little adventure as the PET staff struggle to find a vein in which to insert the radioactive glucose IV. I told them to just use the vein on top of my hand this time instead of messing around with my finicky arm veins, so it went off relatively smoothly. I sat in the dark for 90 minutes to get fully radioactive, slid through the PET machine and I was on my merry way.
We returned to my oncologist a few days later and received a hero’s welcome from the staff, who hadn’t seen me in three months after our weekly chemo visits came to an end.
Unfortunately, my veins were not ready to celebrate this homecoming, and the usually painless blood test administered by the expert nurses in the oncology office proved most difficult. They couldn’t find a vein in my left arm, then they couldn’t find a vein in my right arm. If you’ve read enough about my experience with needles, you can probably guess that these two failed attempts left me woozy and sweaty and ready to receive my Last Rites. I put a cold pack on my forehead and downed some sort of chocolatey blood sugar-boosting drink and went to an examination room to lie down and return to normal. They then tried to take my temperature and blood pressure (another standard part of the visit), but the cold pack had left my forehead a balmy 85 degrees and the near-fainting spell had lowered my blood pressure to a ridiculous level. Oops.
When the blood-sucking nurses returned (that adjective describes their job, not their demeanor!), they were at last able to coax a vein in my left arm to cooperate and we could finally move on to the actual checkup.
Unfortunately this checkup was about to follow in the footsteps of many previous checkups, in which questionable news is delivered in infuriatingly unclear ways.
After exchanging it’s-been-a-while pleasantries, my oncologist looked at my PET report for what seemed to be the first time, and pored over the results in silence for what seemed like several minutes. This was taking longer than it should have. WHY?!
Doc: “You have a sore throat?”
Doc: “Post-nasal drip?”
[insert panic here]
He eventually revealed that my lymph nodes thankfully had not grown in size and showed no abnormal activity. Yay! He also mentioned that I still have an above average-sized spleen (which makes me special, not cancerous). Yay! The only negative aspect of the scan was that it showed some activity in my tonsils–meaning that sugar was doing something inside them. This could just be my immune system battling a sore throat or cold (which I have been flirting with for months) or it could be a sign of something more serious.
Still reeling from the less than ideal way in which this news was delivered to me, I must have been wearing my annoyance on my face, because the doc told me that I shouldn’t be frustrated. As a cancer survivor in the first year of remission, even the slightest abnormality is taken very seriously and tested to death to ensure that the cancer has not returned in any form. He assured us that it was probably nothing, but that I would have to return to an ear, nose and throat specialist and have another scope put down my throat to ensure that everything looked clear.
I have frequently joked that the past year of my life has been the Down With Lumpy TV show, which features recurring characters (like my oncologist or the PET scan staff) as well as guest stars who appear in several episode-arcs on the show.
Season two of Down With Lumpy began when I hit remission and now it was clear that the ENT doctor who appeared in the pilot episode to diagnose me with cancer and perform the surgery on my lump was a fan favorite. He would be making a guest appearance in season two.
It was quite a while before we could get on his calendar, however, which meant that I didn’t actually get to see him until today. I had to carry around that uneasy feeling of “What’s going on inside my tonsils?” for a couple weeks before the question would be definitively answered.
My fears and emotions ebbed and flowed on this point. Some days, when it felt more like a sore throat was imminent or I was frequently sneezing, it was easy to dismiss the tonsil activity as a blip on the radar and my immune system doing its job. Other days, I would finish shaving my face and spend some time rubbing the side of my neck, wondering if Lumpy was preparing to rear his ugly, protruding face again–just in time for the holidays.
I finally opened up and talked to Theresa about this last week, declaring my frustration at myself for getting worked up over what was probably nothing, as well as my fears that this was actually something more than nothing. With it being almost exactly one year since running through my initial diagnosis gauntlet and having now scheduled a return trip to see the same doctor who gave that diagnosis, I was experiencing some cancer scare deja vu.
Thankfully, Theresa was able to talk some sense into me, by reminding me of perspectives that I know to be true, but sometimes easily forget in the moment. The fact is that I am a cancer survivor and I am alive. I am still here for a purpose that God alone knows and that I can only pray to fulfill. Nobody likes a rerun, but if the cancer ever returns, there will be a purpose in that as well, and He will grant me the strength I need to overcome it, or otherwise fulfill my purpose through that experience.
It’s in moments like these–when Theresa knows exactly what to say to me–that I am reminded anew of the perfect plan that brought her into my life and made her my wife. Who am I to question that the plans for any other part of my life (no matter how seemingly troublesome) are not equally perfect? Be still.
And so today, nervousness intact but with a renewed sense of divine trust, I ventured back to the ENT doc so he could scope out my throat again. This doc is one of the best ones I have experienced throughout my cancer treatment, as he does great work (exhibit a: the barely visible surgery scar on my neck) while also maintaining a friendly sense of humor. He immediately joked that I should have waited a couple weeks so that it could truly have been our one-year anniversary.
I reminded him about that first fateful meeting, when his scoping of my throat provoked a vasovagal response, and he said he remembered, so we proceeded with caution. The process involves first squirting some nasty liquid up my nose to work as an anesthetic on the passage he will be scoping. He told me that he would put the scope in–basically a long flexible wire with a light at the end of it–and I would stick my tongue out and say “aah.” The whole thing would last about 30 seconds. I couldn’t quite remember how the actual scoping worked, so I opened my mouth.
“I’m going through your nose. You can’t trick me by opening up your mouth.”
The scope went in, I felt a little pressure as it wound its way through my nasal passage and down my actual throat, I said “aah” and it was over. He pulled the scope out and asked how I was feeling. For whatever reason, my body behaved and it wasn’t so bad this time. The doc pulled the monitor over so Theresa and I could watch the video that the scope’s camera had just collected of my inner workings. Isn’t that incredible?!
He pointed out my nasal hairs, the misshapen interior of my broken nose (from a baseball accident many years ago…nothing he did) and then down into my throat where the questionable tonsil activity was occurring. He pointed out the two tonsils and said that everything looked normal. He told us that we were able to leave.
It’s been more than three months. I’m still in remission. I’ll never complain about a sore throat again.
This past Saturday, I spent 12 hours outside and had the most active day of my year thus far. (When you’ve spent most of 2015 on the couch, that’s not a very high bar, but still…) It was finally time to Relay For Life! I’ve been begging for donations for quite a while on this blog, so I’m sure devoted readers are well aware of the concept of the Relay, but basically it’s a fundraiser for the American Cancer Society that serves as a 12-hour celebration for cancer survivors, caretakers and their family and friends. Team members take turns walking laps around the track while enjoying the various bands and other activities that are a part of the event.
We haven’t had much of a summer to speak of in Chicago this year, so we were all thrilled that Saturday was perhaps the most glorious day we’ve had yet. Team Down With Lumpy set up its campground with a couple canopies, a couple folding tables and a whole lot of food. The official team consisted of my immediate family and my friend/coworker Katie, but we also had a lot of visitors throughout the day, which made it extra special and even more fun.
The highlight of the event is the Luminaria ceremony, which honors cancer survivors and those who have lost their fight against the disease with candlelit glow stick-lit bags decorated and dedicated to these individuals. The luminaria line the track and all the teams walk laps as the names are read aloud. This was a very emotional point of the event for me, as the procession was led by a bagpipe group that just had to play “Amazing Grace” (a near instant tearjerker). Seeing all the luminaria bags representing those who have died made me realize anew just how blessed I am not only to be ultimately cured of this disease but also to be well enough during treatment to even participate in an event like this. I’ve had a few setbacks on this journey and some uncomfortable days, but the outpouring of love and support that I have received and the perspective I’ve gained on human suffering and the preciousness of life have made it worth the struggle.
Thanks to the generosity of many (and many who read this blog!), Team Down With Lumpy ended up raising more than $3,000 and the entire event raised more than $40,000! I also managed to meet two celebrity guests at the Relay, so what more could I ask for? (Side note: At one point, Captain Jack Sparrow approached our campsite and asked “What’s the Munchkins situation?” and proceeded to take one from our box of Munchkins. A true pirate.)
All in all, I am so grateful to my teammates and to everyone who donated, visited or just generally supported me in spirit. It was a day that I’ll never forget and a true highlight of the past six months.
A while back, I thought I had three chemo treatments to go until I would thankfully be on my way to the final PET scan and No Evidence of Disease. The encouraging-but-inconclusive results of my halfway PET scan meant that I was actually still penciled in for 3 more months of chemo. At the time, that was quite a blow. I felt like Mr. Bean taking the stairs.
But now I am ecstatic to report that I am even further along than I thought I was back then: I’ve only got two more chemo treatments to go! I have completed 10 of 12! When I look at those numbers, it’s hard to believe that I’ve gone through the chemo motions 10 times already. I mean, it’s always a pretty terrible experience, but reaching double digits is still somehow incomprehensible.
I’m feeling my usual brand of Chemo Chrappy™ today, but if this round is anything like the last few, I’ll be over it by Thursday at the latest. I’m not exactly sure when it happened, but chemo is no longer my master. Once it’s administered and I’ve survived a couple lackluster days, I’m able to live more like the pre-Lumpy days…even if I need to take more frequent breaks and be ever vigilant about staying away from sick people.
In the past couple weeks I’ve been able to do a lot: we attended a friend’s wedding complete with some vigorous swing dancing, we hosted Theresa’s parents for the weekend who helped us lay a concrete foundation and build a shed, we took advantage of free tickets to Ravinia to see the Gipsy Kings , we shot and edited a Muppet video, we had my brothers over and got them hooked on Sherlock, we biked into town for lunch at Jason’s Deli (I’m so glad chemo hasn’t killed my tastebuds), celebrated Father’s Day at the Chicago Botanic Gardens and more.
Through all of this, I continue to feel very healthy and incredibly blessed. I have no plans to see the inside of a hospital for the duration of this treatment. That’s so 7 rounds ago. In other news, I’ve regained 5 of the 10 pounds I lost and some of my hair is starting to grow back. At first I was a little concerned that this meant the chemo was somehow not being as effective as it was supposed to be, but my oncologist assured me, “As a bald man myself, trust me when I tell you that any hair growth is good news.” Whatever you say, doc!
I’m looking forward to Relay For Life this weekend, and I’m overwhelmed by all of the donations I have received! Everyone has been so generous, and it makes me happy to know that my battle is helping to raise money to help eradicate this disease. Thank you so much!
I’m humbled to report that my personal cancer story is getting out there in other ways, too. My friend and former colleague Belinda interviewed me about how I’ve been using social media (and the #DownWithLumpy phenomenon) to cope with my cancer fight and included me in her article for Make It Better magazine.
I also got the good news today that my guest blog post went up on Patheos, a popular faith blog network. It’s the same post that I wrote for the Society of Helpers newsletter and reprinted here a few weeks ago, but it’s sure to get a lot more exposure on this site, so I’m really excited! It’s such a blessing to be able to share my story with others. Writing these posts and getting supportive feedback has been one of the most awesome and rewarding parts of this entire journey.
One of the many reasons that I wanted to be so public about my experience was in the hopes that others with cases similar to mine might find my blog and read an honest account of what they could expect. Obviously no two people are exactly alike–and I have broken the Hodgkin’s mold in several ways myself through various side effects and complications that I have or have not endured–but I have tried to at least provide an authoritative report of what I’ve gone through.
At the end of May, I received an e-mail from someone who singlehandedly made me glad I’ve been blogging so thoroughly. L is around my age, lives in the same city and was just diagnosed with the same stage of Hodgkin’s after finding a strange lump in her neck that wouldn’t go away. Sound familiar?! It was so gratifying to hear that she randomly happened upon my blog and found it informative, comforting and funny at a time when she was feeling anxious and didn’t know what was on the horizon. I feel blessed to have provided some of the peace of mind for her that I remember seeking so desperately at that time. She recently had her port installed and is doing pretty well after her first chemo treatment, but please keep L in your prayers as she continues her treatment.
Thank you as always for your continued prayers and support. It means so much to me when I talk to people and they say things like, “You’ve got #10 this week, right?” without my even telling them. Your level of personal investment in my situation continues to astound and inspire me. Two to go!
As I’ve mentioned before, I’ll be participating in the American Cancer Society’s Relay For Life event on June 27 for the first time since college. It’s my hometown’s Relay, so I know it’s going to be an extra special day for me and a chance to celebrate the battle I’ve been waging since January and the fact that (by then) I’ll have less than a month until I’m done with chemotherapy! I’m so happy to even be able to type those words!
Since signing up for Relay, I’ve been trying to think of something creative I could do to raise money. I’m not crafty or culinary, so I couldn’t do a bake sale or knit anyone a scarf. I did create some #DownWithLumpy t-shirts ($5 from each purchase goes to my Relay team!), but they’re not selling very well beyond my Mom (who bought 3).
At this point I decided that if I can’t woo potential donors with physical goods, I could at least try to entertain them. A few weeks ago, I realized that when I’m wearing my glasses I bear more than a passing resemblance to my younger brother’s toy Muppet. Being both a professional multimedia producer and a Muppet-lover, I started thinking about how I might use the Muppet to make a video about my cancer treatment. After two evenings of filming and editing, I’m proud to present the following.
If you’re so inclined, here’s the link to donate. I’m so grateful to the MANY people who have already generously given to our team. Thank you so, so much!
I’d also like to thank Theresa for her help in putting together the video. I couldn’t have done it without her patient videographer skills and co-Muppeteering. She also contributed some crucial comedic scene ideas, like the Muppet wearing a mask and putting on hand sanitizer. Priceless. As usual, she’s my perfect partner in crime.
I’m hoping to write a full Lumpdate soon, but for now I’ll just say that I have been feeling very good during this in-between-chemos week and have been keeping very busy making Muppet movies and doing other (more normal) activities. Thanks for all the continued prayers, well wishes and check-ins. And thanks to Rosie for a special delivery of oatmeal-chocolate chip cookies! The mail has never tasted so good.