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Nice To Meet You Again.

For a year and a half I was very sick. Whether it was the cancer itself, the chemotherapy, the radiation, an infection, the transplants and the long list of complications that came with them, or the immunosuppressants, there was always *something* wrong with my body. As strange as it may sound, after a while, I just got used to being sick. Not the feeling itself – you don’t get used to that – but the state of being.

Hi, I’m Justin, the sick guy. I enjoy sleeping a lot, hot wings during the one week out of every month that I can keep them down, long walks around the hospital, and care packages (especially the ones with sneakers). Nice to meet you.

In the beginning, I told myself that I wouldn’t let being sick define me and, to the outside world, I don’t think it did. I made a point not to complain, no matter how horrible I felt or how depressed I was. I joined support groups and started seeing shrinks so that I’d have somewhere to dump my emotions. I made sure to highlight the good things in my life instead of the nasty old disease that was trying to kill me. Because of that, people saw a fighter. People saw someone who wasn’t going to let cancer control his life.

And, that’s who I was.

But after a while, there was a change in the way that I thought. It wasn’t immediate. No lightbulbs went off. I couldn’t even tell you when it happened. But at some point I stopped thinking long term. I stopped imagining what life would be like when this was all over. I stopped making plans with “I should be fine by then” attached. Instead of seeing my fight as a sprint, I started to see it as more of a trek. I knew there was a finish line, I just didn’t know where it was or how long it’d take to get there.

So I just kept going and going and going, until one day I looked around and I had crossed the finish line.

A couple of weeks ago I got all of the good news that I could possibly ask for. I’m cancer free, and my transplants were successful. Soon we’ll be removing the TriFusion line from my chest and my doctor’s appointments will start to get further and further apart. I can travel again, and I’ve even had a few beers. Obviously things don’t just go back to being normal, though – I still don’t feel great all the time and I’ll be on some of these meds for months or maybe even years. There will still be tons of doctors appointments, scans, and biopsies in my future, but that’s a small price to pay to be where I am.

But now what?

It didn’t hit me until I found out that everything had worked that I didn’t have a plan for what was next. What do you do after cancer? Do you just pick up where you left off? Is that even possible? What if you don’t want to? What if you have a long list of new passions and ideas that you want to explore? What if the way you see the world is different than it was before you got sick? Can you put “I totally had cancer and almost died” on your resume to explain a gap in your employment?

I don’t know the answers to any of these things yet, but I figured that I’d start with the things that I do know.

My name is Justin. I’m not sick anymore. I still enjoy sleeping and hot wings, but I don’t spend much time in the hospital anymore. And I still accept care packages. Nice to meet you again.

Now, that’s some scary shit.

While I had no clue how sick I was at the time, I’ve always looked at Halloween 2015 as the informal anniversary of when this whole journey started.

One of the reasons that this particular day stands out is because of this picture:

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I’ve stumbled on to it quite a few times over the last year, and I’m always stunned by how frail I look. I’m a big guy. My hands are big (XXXL in most gloves), my feet are big (size 13), my head is big (size 8 hat). When I’m not working out, I can get up to nearly 300 pounds without looking too much like a scoop of mashed potatoes. At the point where I was in the best shape of my entire adult life, working out 7 days a week and eating little to no meat, I was still hovering somewhere around 260. The day I took this picture, my weight had fallen to 253.3 pounds without my doing much of anything. I was wearing a size 38 jeans, and an XL shirt – the smallest clothes that I had purchased since I was about 16. It might sound crazy, because I was still a big guy by normal standards, but I was literally wasting away. Looking through some old Facebook posts, I see that I lost five pounds that week, without working out once.

The next memorable moment from that day happened when my friends Paya and Shawn came over with their two darling little girls to go Trick-or-Treating. When they arrived, I stepped out on the porch to greet them, because I am a gentleman and a gracious host. The moment Paya stepped out of the car and took a look at me, she yelled out “HOW MUCH WEIGHT HAVE YOU LOST?!” We all laughed; I probably struck a very sexy pose (this part cannot be verified), and then began our yearly tradition of knocking on strangers’ doors and asking them to give us things to eat. Paya and Shawn are some of our closest friends and at this point we saw them pretty often; it had probably only been a few weeks since Paya had seen me. In hindsight, her reaction to my physical appearance probably should’ve set off more alarms, but I had been to the doctor, had a full physical including blood work (btw wtf?), and been assured that aside from low vitamin D I was healthy.

Spoiler alert: I wasn’t healthy.

It was later this night that my wife pulled me to the side and told me, very seriously, that I looked sick. Really sick. If you’ve ever spent any time around us, you’ll know that were not very serious people. We make jokes out of pretty much everything, and we tease each other – innocently, of course – pretty much constantly. That’s just how we get down. We joked about my mysterious weight loss daily. We blamed it on gypsies and laughed at how loose most of my clothes had gotten. I even remember her telling me that I better not have cancer, because it would really piss her off. The reason this moment sticks with me is her tone. In the nearly 20 years that we’ve known each other, I don’t recall another moment that felt like this one. Of course we’ve had our arguments and moments where she told me that I really needed to get my shoes out of the living room, but this was different. I think it was more of an intervention than anything. We wouldn’t know what was wrong with me for a few more days, but she wanted me to know that she didn’t think it was funny anymore.

A few other things about last Halloween stand out to me, too, like being really tired from walking down the block and back. And having on nothing but a t-shirt on a chilly night but still managing to break a sweat while everyone else wore jackets and complained about the cold.

Before my son was born, Halloween was never a super important day to me. I’m not the type to go Halloween parties or decorate my yard with skulls and cobwebs. Honestly, I was always one of those people that turned off all of the lights so that the Trick-or-treaters assumed that no one was home. Once my son was born, all of that changed. Now I look forward to carving pumpkins on the front porch and listening to my son change his mind 100 times before we finally decide on a costume. I even leave the lights on and hand out candy now. Halloween is just one of those days that are always memorable for parents. I plan to celebrate another 60 or 70 of them, but I know -or maybe I hope- that none will as memorable as last Halloween.

 

Happy Halloween!

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November: Come at me, bro.

My first three weeks of remission have been pretty great, overall. Right now I feel like I could build a house. I absolutely could not build a house, but I feel like I could. There will still be side effects that I have to deal with, other procedures to undergo, and a period of general uncertainty that I’ll need to navigate through… but if I can beat cancer, I can deal with that stuff too.

So, what’s next?

Well, going into my first stem cell transplant I knew that the best way to achieve long-term remission or total cure was to follow up with a second stem cell transplant. Unlike the first procedure which used my own stem cells, this second transplant would require donor cells – which means there would have to be a donor search in order to find a match before we could proceed. Luckily, we were able to find multiple compatible donors very quickly, and before I knew it the table was set for another hospital stay. As you can imagine, my initial reaction was to flip a couple of tables over, dive out of a window, and live the rest of my days under a new identity somewhere these doctors could never find me; but eventually I was able to put things back into perspective. I want to live for a long time, and I’m willing to do whatever is required of me to reach that goal. So, here we are.

In the early part of November, I’ll be checking back into the hospital for another 3-week stay where I’ll get my current immune system suppressed and replaced with a brand new one. It sounds like history repeating itself but there will be a few differences this time around. Using donor cells presents the opportunity for a few complications that I didn’t face last time, mainly Graft vs. Host Disease, which is caused by a transplant recipient’s body attempting to reject the new cells. Another big difference this time is that I’ll be receiving radiation to prepare for the transplant instead of chemotherapy. I go back and forth between excited and nervous about this one, honestly. On one hand, I’ve never done radiation before and I don’t know what to expect. On the other, it’s not chemo, which is a blessing in itself, for a ton of reasons – one of which being that I shouldn’t lose my hair this time.

But that’s not the only thing happening in November, my friends!

Right around when I preparing to go into the hospital for my first transplant, I got a call from someone at the Cancer Support Community of St. Louis offering me the opportunity to act as their official ambassador at one of their major fundraising events for the year. Laughing Matters will be a night of improvisational comedy, where I’ll take the stage alongside a pro from the Improv Shop and attempt to raise money by earning votes for my performance. I’m beyond thankful for the opportunity to give back to an organization that has done so much for me. I’ll be the only survivor on the stage that night, and there’s actually a pretty good chance I’ll be leaving the hospital to perform and going right back to the hospital when it’s over. If that doesn’t earn me some extra votes, I don’t know what will.

Speaking of votes, you can cast a vote or two or two hundred for me right now if you’d like! I’ll link to my page on the Laughing Matters website below. There’s even a video of my big, shiny face and head speaking about why CSC and Laughing Matters are so important to me. Take a look. Thanks, friends!

My Laughing Matters Profile : VOTE!

Day 318

On November 2nd, 2015, I went to the emergency room for a stomach ache.

On November 3rd, 2015, I was told that I might have cancer.

On November 10th, 2015, I officially diagnosed with Diffuse Large B-Cell Lymphoma.

On November 12th, 2015, I started my first of six planned rounds of chemo therapy.

On November 29th , 2015, I lost my hair for the first time.

On March 30th, 2016, I found out that the cancer remaining in my body was resistant to the drugs that I was taking, and that I would require additional treatment.

On April 22nd, 2016, I started on my second treatment path, including three rounds of stronger chemotherapy that required a 3-day hospital stay with every round.

On June 1, 2016, I had a PET scan to determine if my disease was responding to my new treatment. It was, and I was was  in “partial remission.”

On July 11th, 2016, I was admitted to the hospital to receive an autologous stem cell transplant, and I began my tenth overall round of chemotherapy to prepare my body for the transplant. These drugs were strongest yet.

On July 18th, 2016 I received my stem cell infusion.

On August 1st, 2016 I was released from the hospital and returned home.

On September 14, 2016, at 10:30am I arrived at the hospital for a followup PET scan, my first since June, with the purpose of determining if the most recent combination of chemotherapy drugs were successful in killing off the remaining cancer in my body. I was eerily calm, far removed from bundle of nerves that I was in March. That time, I was so excited and convinced that I would get good news, that I sent out an invitation to a happy hour to tell my friends the news days ahead of the scan. This time, I hadn’t spoken publicly about my health in weeks and nobody but my closest friends even knew what was happening. While not a conscious decision, I wanted to avoid taking everyone through another huge letdown with me. I knew that bad news this time probably meant that I was pretty much out of options and would call for conversations that I couldn’t have at a happy hour.

The scan itself was over just as quickly as it started – one shot and some waiting around, then 15 minutes lying in a big tube and you’re done. I had about an hour to wait before I could actually see my doctor and discuss the results, so I treated myself to a delicious hospital hamburger and fries. I listened to some Chance The Rapper and did some reading. I browsed Facebook and thought about what points I wanted to hit in a speech I was giving the next morning. I waited for my nerves to kick in, but they never did. Even as I sat in my doctor’s office waiting for her to finally twist the knob, I was at peace. I had spent many months coming to grips with the fact that all of this was out of my control. I had done my part and my doctors had done theirs – whatever came next was always going to happen.

Eventually, she did come in and I learned that I’d have to be patient just a little longer. She was able to assure me that things were better, but she needed to get the opinion of an actual radiologist before making any official diagnosis. She sent me home, and told me that someone from the office would give me a call in a few hours.

On September 14, 2016 at 3:06pm I sat in a local bar and ordered beer.

On September 14, 2016 at 3:52pm I got a call from the nurse coordinator at my doctor’s office.

“Are you ready to do your happy dance?” she said.

I was.

Because I had put the idea completely out of my head, finding out that I had finally achieved complete remission almost knocked me over. In that moment, I found myself feeling what felt like a million completely different feelings. I was overwhelmed with joy. I was shocked to the point of speechlessness. I was thankful that I had found myself in such capable hands. I was grateful for more time with my son. I was amazed by how much time my wife spent crying after I told her the news. I was excited to tell my grandmother some good news after a year in which she lost one grandson, watched another battle cancer, and suffered a stroke of her own. I was relieved to tell everyone that had held me up through this entire experience that, at least for now, we could finally exhale again.

But I was also uncertain. In the blink of an eye, the world had gotten so much bigger. For nearly a year, having cancer was the center of my universe. I tried hard to make sure that being sick never became the only thing in my life, but it was the one thing that every other part of my life had to adapt to. My friendships had to become malleable in order to accommodate my varying ability to be an active participant in them. My friends had to adjust to the fact that some days I just didn’t have anything to give. The professional goals that I had at the time of my diagnosis were either put on hold, or have changed completely. For almost a year, my relationship with my physical health had been reduced to completing a checklist of tasks with the goal of not dying. Even the way that I thought about time and life in general had changed. In my mind, I didn’t have the luxury of concerning myself with anything that wasn’t right in front of me, so I didn’t. I spent almost a year living in a very small bubble, and in and instant it had burst – exposing this new version of me to a world that it had never lived in.

I’m okay with that.

I know that you don’t spend a year battling stage 4b Lymphoma and just go back to the life you had before when it’s over. There will still be steps that I need to take to increase my chances of staying in remission. There will still be constant scans and tests to  see if the cancer has come back. There will still be support groups and therapy sessions. Every day I’ll be learning a little more about life as a cancer survivor. I’m not the man that I was before my diagnosis, and I’ll never be him again. Instead of putting my old life back together, I’ll have to figure out how to use those pieces to build a new one.

On September 15, 2016, I realized that I didn’t need to count the days anymore.

 

Transplant: Day 16

My mustache fell off today.

The entire thing.

I had a mustache when I woke up this morning. Sometime around midday I looked in the mirror and I didn’t have a mustache.

It wasn’t in my life very long; it made a tremendous impact in the short time that it perched itself upon my upper lip. I still remember the day that my son noticed it for the first time, and said “Daddy, your mustache coming back?” From that day forward, he carved out a little portion of every FaceTime conversation we had to talk about my mustache.

It wasn’t the biggest or fluffiest mustache that you’ll ever see. It didn’t have handle bars, or curl up into twisted corners like that of a television villain, but it was mine.

I’ll miss you friend.

I leave you with a poem.

Tom Selleck has one, Burt Reynolds has one too,
Lionel Richie has one far too thick to comb through,
The Frito Bandito had one, but shucks he was racist,
Borat, and Ron Burgandy had them stuck to their faces,
You can be handle bars, or goatee if you grow to the chin,
This isn’t goodbye, it’s farewell until I grow you again.

Sincerely,
Justin

Transplant: Day 15

Just a quick update today:

I actually woke up feeling better than I have in a long time. My energy levels were good, no real nausea to complain about, and I was able to stay awake for more than an hour at a time. Unfortunately, it was short lived and I ended up shivering violently for about 2 hours after taking a shower. I also started to run a fever for the first time since I’ve been here, which could be a sign of infection. My new immune system isn’t quite ready to go yet, so they put me on some broad spectrum antibiotics while we wait for my tests to come back. Physically, I don’t feel bad, I’m just back to being super sleepy and taking a nap every 2 hours.

Let’s hope for no infections and no more fevers.

Also, I got my first Neupogen shot today. If you remember, these are the shots that will make my dear old body start making white blood cells again. I still won’t be free for a few days, at least, but now it’ll be easier to start gauging how close I am to being well enough to get out of here.

Ok, I’m going to bed. Onward to week 3!

Transplant: Day 13

The word of the day is sleep.

I’ve never been a person that needed a ton of sleep. For as long as I can remember, 5(ish) hours has been the sweet spot for me. If I get more than that, I’ll spend the whole day trying to wake up. If I get less than that, I’m a sourpuss. I’ve never been a nap person, and never really caught myself longing for sleep.

Until now.

For the past few days, all I’ve really been doing is sleeping. I think I took 3 or 4 long naps today, which resulted in my sleeping more hours than I was awake. I’ve never really felt like this before, and it’s a little scary. I know I’m supposed to be tired, but I feel like I’m spending less and less time awake – which, honestly, is weird. Here’s a little example of how tired I am: Earlier today, I asked my nurse to unhook my IV so that I could go for a walk. She agreed and unhooked me. You know what I did? I rolled right over and took a nap the moment she left the room. It had been maybe 2 hours since my last nap, and I had no intentions to take another. But my body just clocked out. Eventually I got up and walked, but I was ready to sleep again by the time I got back. Tomorrow I might chart the hours I sleep – my guess is that I’m spending 16 or 17 hours a day with my face in the pillow.

Aside from all of the beauty rest I’ve been getting, things seem to be going according to plan. I did have to get a blood transfusion yesterday, and platelets the day before, but those things are expected. I haven’t vomited in a couple of days, still haven’t shit my bed, and I’ve managed to avoid running a fever. My appetite isn’t great, but I’ve been able to eat something for most meals. I broke things off with WingStop, and have been spending an increasing amount of time with applesauce.

The mental part of all of this gets a little harder every day. I miss my kid and my wife. I miss my couch. I miss my Xbox. I miss my sneakers. I miss meals that weren’t prepared in 45 minutes or less. I miss peeing directly into the toilet instead of collecting it in these silly jugs. I miss being able to sleep on my stomach without fear of unplugging my central line. I miss driving. I miss fresh air. I miss having an internet connection that is strong enough to illegally download movies.

(Whoa, now. Not that I would ever actually do that. I’m just saying that I could’ve if I had wanted to…)

But, the good news is that I’m getting pretty close to the end of my stay. In a couple of days, I start with my Neupogen shots, which will get my counts headed in the right direction – and once everything is at safe levels for a couple of days they’ll send me home. Odds are that I’ll become the biggest pain in the ass in this entire hospital once going home becomes even the slightest of options, so expect to read some blogs about my “negotiations” with the medical staff in the next few days.

Alright, buds. I have to go to sleep now. Onward!

Guest Post: Transplant Day I Don’t Know They’re Running Together (it’s Jennifer)

Friends:

It’s me. Jennifer. I’m giving Justin a well-deserved break from blogging, and bringing you a report from the field.

A quick health update: shit is getting weird, as promised. There is blood, white blood cells are basically gone, fatigue and nausea are high, and more. The good news is that none of this is unexpected, and the doctors have it under control. The bad news? Blood, no immune system, puke, etc. But again: Justin is progressing just as his care team expects him to be, and is doing quite well, other than normal side effects. 

Justin is a tough guy. No joke. I am so impressed and proud when I watch him brave these awful side effects without complaining. So that part is more of the same. But the being apart thing is HARD. He and I have lived together a long time. The house is too quiet. Noah doesn’t get my jokes yet. Plus, there’s no partner-in-crime when your kid has a fever for three days and you need to go to work. That happened. So, as you may have guessed, we are quarantined, but everything is under control. No hospital visits, just in case Noah’s germs decide to hitch a ride to a hospital floor full of unsuspecting hosts.

I kind of feel like Justin orchestrated a Make Sure Jennifer Doesn’t Go Crazy campaign behind my back, because Noah and I feel your tremendous love and support every day. Justin is the King of Birthday Celebrations, and I was worried that he would be worried that I would sit alone in the house all day on my birthday this week. I didn’t! Our family and friends made sure the show went on. I missed having him there, but I know that he’s away so that we can celebrate many more birthdays together, not just my [redacted]th year.

So we are doing well with lots of help. Looking forward to a fever-free 24 hours so that I can make my triumphant return to my favorite oncology floor and resume bossing people around (mostly
Justin, the nurses know what they’re doing).

Transplant: Day 10

I have a confession: I almost skipped writing today.

Physically, I feel as bad as I have since this all started. The nausea is pretty bad, and I’m finally feeling some of the other side effects that I have been able to avoid so far. I’m insanely tired. So tired that I didn’t even go for a walk today. Alright. Talk to you guys tomorrow.

Just kidding.

Raggedy body aside, today was pretty good. My lovely bride made her daily visit, with a special guest in tow – my dear friend Jessica, all the way from Washington, DC. If you know me personally, you’ve heard all about my extended family in the DMV. Long story short, when we moved to DC, Jessica and her husband Orrin became our first real friends in the area. We’d hang out regularly and drink like maniacs, celebrate all the important holidays together, and were even present for the births of each other’s first children. Over time, a new couple would pop up here or there, and before we knew it, there was about 20 of us including all of the new babies. We are a village in every sense of the word.

Jessica has always been the glue that held our little rag-tag family together. She’s one of the most generous, humble, and selfless people that I’ve ever met. She’s also the queen of getting things done. Time for a party? Jess will plan it, host it, and handle every single detail without complaining. Going through a breakup? Jess will promptly destroy your ex and reassemble your broken heart. Got cancer? Jess will send a cleaning lady to your house, schedule regular food deliveries, send care packages from the village, and fly 1,000 miles on a random Tuesday to help organize your ever-growing island of unopened mail.

Jess and I have a unique term for our relationship: soul-siblings. It’s like having soulmate, but in the best buddy kinda way.

I probably would’ve kept typing about Jess and my crew forever, but apparently my body decided to turn my heart rate up a couple of notches and now I have to get half naked for an EKG.

(Don’t worry. I’m fine.)

BONUS PICTURE TIME!

Then.

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Now.

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And the babies that started it all.

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Transplant: Day 9

Hello, fam!

Just a quick update today: Considerable amount of nausea and fatigue since I woke up this morning, but that’s all just part of the game. According to my nurses, everything is going well and I’m handling all the side effects admirably. Personally, I consider the fact that I’ve yet to poop in my bed to be my biggest achievement. Seriously. I end every day with a quiet, but celebratory, “yessssssss” for that very reason.

I’m also proud to say that I still haven’t lost my mind. I would certainly prefer to be at home, but somehow this whole 3-week hospital stay thing has been… tolerable? Yeah, let’s say tolerable. Tolerable is a good word. I’d certainly rather be at home, on my couch, playing my Xbox, with my only concern being to avoid pooping on things that I actually own, but I can handle this too.

One thing that is helping me through this is that I’m never lonely. My wife is here every day, and I FaceTime with my son as soon as he wakes up, and before he goes to bed. Today, my very pregnant friend “White Amy” made her second appearance at Casa De La Stem Cells, and my mother and grandmother came to visit for the first time. They brought Wingstop. Speaking of Wingstop, how have they not contacted me about some manner of sponsorship yet?

I also got a few very pleasant surprises today:

My buddy Steve sent me a Jimmy John’s sammich all the way from South Carolina. I mean, the sandwich itself didn’t come from South Carolina, he ordered it from South Carolina. It came from down the street.

(I have no picture of the sandwich, because I ate it too fast.)

…and my wife’s friend Joy sent me this darling expletive-emblazoned hat.

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…and finally, my friend Angela sent me a beautiful card and a medal she received after a race for the Leukemia and Lymphoma Society. How sweet is that?

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Oh!!! …and guess what? We’re almost halfway home 🙂

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