The #DownWithLumpy Movement

No matter what, yesterday would have been a day that I would have remembered for the rest of my life. It was my first day of chemotherapy–an experience I hoped I would never have, much less at this relatively early stage of my life. But when I think back to yesterday, I don’t even remember it as “the first day I had chemo.” I only remember three words: Down With Lumpy.

Since my lovely wife Theresa was the impetus behind this fantastic day, I’m going to let her do a little guest blogging about how she made it happen. Take it away, Theresa:

“Wow, what a great day!” was not a phrase I expected to hear from Matt’s mouth yesterday, but hear it I did, and that was all thanks to the hilarious, creative, and thoughtful people in our lives who took a few minutes to totally change our day. I’m not exaggerating, I truly think this outpouring of support changed Matt’s physical experience yesterday.

The hardest part of any of these treatments has been the anticipation, the nights before spent worrying, the hours sitting in a waiting room thinking about what is to come. Matt is a natural worrier–a blessing for someone like me, whose mantra of “Don’t worry about it…it will be fine” can often lead to trouble. Anyone who has been part of an event I’ve “planned” knows I need a husband like Matt to think about possible outcomes and figure out contingency plans. However, this instinct to worry can make the lead-up to medical procedures much more difficult (Why do doctors insist on telling you everything that could go wrong ahead of time? Why?? Can’t they just tell me on the side and tell Matt that there are no possible side effects?) This was never more true than Thursday night, the night before his first chemo. Matt had already had surgery that day to get his port and was feeling sore and tired, and on top of that was incredibly stressed about what the next morning of chemo would bring. It was probably the most difficult time for me so far with this whole experience, because there was just nothing I could do to make him feel better. Helplessly watching someone you love suffer is awful. All I could do is pray for peace and sleep for Matt, and do some worrying myself about what the next day would bring.

Then Friday morning, I woke up to an excited, “Did you do this?? Why is everyone posting pictures for me?” I quickly made Matt put away his phone and save the pictures for when he was actually in the doctor’s office. As we got up and started getting ready to go, Matt hurried me along. “Come on, hurry up! Now I’m excited to get to chemo!”

After getting to the office, getting some blood work, and a check up by the doctor, we had about an hour of waiting before we could start the actual chemo, and this is when we started looking through posts. I was blown away! I never expected the kind of response people gave, to have so many pictures and messages, from so many people, and to have them be so fun and creative! Without all of this, I’m sure that would have been a miserable hour of waiting, maybe even leading to what our nurse told us is “self-induced nausea”–nausea some chemo patients give themselves when they worry too much about their treatment. Instead, it was a fun and very relaxed day, full of love and joy.

One of the most fun parts was seeing the different areas of our life step up, take this project and run with it. Thank you to Chris for getting Matt’s friend crowd, to Christine and Tim for spreading this around Sheil, to Tom and Katie for getting Catholic Extension (and Archbishop Cupich!) involved, to Orko and Kelsey for rounding up Medill students, to Brendan for getting this out to Northwestern University Relations, to Brent and whoever else got the word out to Northwestern Alumni Relations, to Doug for getting Willie the Wildcat involved, and especially moving to me, to my family for getting my entire elementary school to chant and pray for us. Also a special thanks to Northwestern University President Morty and Northwestern Head Football Coach Fitz for being good sports (I am never deleting my personal voicemail from Coach Fitz calling to work out details of how he could send me a picture after I emailed him. Side note, how do you address someone like that when you call them? I went with “Hi Coach…” but that felt super awkward… And now I’m just bragging that I got to call Coach Fitz on his cell phone! Woo!)

But seriously, I can never thank everyone enough for helping me to make this easier for Matt in a way I never could have done on my own. I was moved to tears by the outpouring, and it has made me reexamine the way that I reach out (or fail to reach out) to others in my life dealing with similar hardship. It is amazing what taking just a few minutes to send a kind word can do. Thank you for loving us and for showing us how to love more fully!

Thanks, Theresa! I’m also jealous that she is on Fitz’s speed dial now.

So now for my reaction. Anyone who knows me well knows that Facebook and social media are a far too integral part of my life. I’ve given up Facebook for Lent more times than I’m willing to admit. I’ve also been doing social media professionally (for NU and now Catholic Extension) for the past 8 years. I’ve tried to make things “go viral” on social media in the past to varying levels of success.

But yesterday was the first time that I’ve ever logged into Facebook and my entire newsfeed was all about me. No exaggeration. I woke up before Theresa and just scrolled and scrolled through endless #DownWithLumpy posts. I was shocked. And loved.

I still can’t get over it. I keep searching #DownWithLumpy on Twitter and scrolling through all the results again. Thanks to Brendan for compiling a lot of the posts in this Storify, but it’s not exhaustive and it would be an impossible job to try to collect all of the messages, photos and posts that Theresa and I received yesterday.

And she’s right…This absolutely had a transformative effect on my day. I was no longer thinking about my freshly installed port or the fact that they would draw blood or the potential side effects of chemo. All I could think about is how amazing it was that so many people took the time to do something so wonderfully supportive and creative just for me. I was also dying to read all the posts! But rules are rules and Theresa wouldn’t let me peek til we were at the hospital.

After a quick breakfast of toasted peanut butter and jelly, we made our way to the familiar oncology office, where the waiting room was already jammed at 9:30 a.m. I went to make my co-pay and noticed someone familiar in the accounts office with me–it was Mrs. Walters, who was my substitute teacher in pre-school and throughout grade school. I introduced myself and she congratulated me on my recent marriage that she had somehow heard about. You never know how your path might cross with someone again. I would never have predicted I would be chemo buddies with my pre-school sub, but suddenly we were both in a room full of recliners and the nurse was undressing my port.

Aside from the #DownWithLumpy posts, the best part of yesterday had to be my port. Quite simply, I’m in love with it. They stuck me one time (which didn’t feel great, but whatever) to put the needle in. After that, they could take and give whatever they wanted into my vein and I felt absolutely nothing. They drew three vials of blood and I was like, “Have another.”

chemoday1After the blood test, we retreated to the waiting room, where I started ravenously devouring all the posts on my Facebook, Twitter and Instagram feeds. Soon it was time for my checkup with Dr. Mirsa, who informed us that he had spoken to my U of C second opinion oncologist and they had changed my treatment regimen. I will now be doing two months of chemo, a PET scan, and then two more months of chemo if the scan is clean. If it’s not clean, I would either have radiation or four more months of chemo. But let’s not allow for that possibility, OK?

A medical student was with my oncologist and he was teaching him how to feel my enlarged lymph nodes. He told the student that sometimes they are very tender and you need to be gentle. It took everything in my power to not scream into the student’s face when he reached out to touch my neck just to freak him out.

Once that fun was done, we went back to the waiting room to wait for them to call me in for chemo. We were then ushered into a private chemo room with a recliner, a TV, VCR, DVD player and IV stand. I quickly obtained the all-important wifi password and we settled in. After a little more waiting, a nurse arrived to give us the lowdown on exactly what poisons would be flowing through my bloodstream today. She gave me a test shot of one of the chemo drugs in my arm to make sure that I wouldn’t have an allergic reaction. She also started an IV feed of nausea medicine, liquids and Benadryl, which hit me like a ton of bricks after about 20 minutes. I could not keep my eyes open! It was crazy.

I rested for a bit but also never really fell asleep. The nurse came back several times to change the fluids flowing through my IV, including a red chemical that she said would turn my pee orange. She was not wrong. Since so much fluid was being pumped into me, I kept having to use the bathroom, which meant dragging my IV stand behind me into the men’s room. Something about that action makes you feel quintessentially like a sick guy. But I always returned to my phone, where the posts continued flowing in. It was so incredible.

I didn’t know what to expect in terms of side effects for the hours spent actually receiving the chemo, but I didn’t have any beyond the brief drowsiness from the Benadryl, so I’m really grateful for that. We finally left the hospital around 4:30, so hopefully it will go a little faster next time.

When we got home, I almost immediately felt like I had been hit by a truck. I was so tired and also kind of on the verge of nausea. Theresa went to get the nausea medication from Walgreens and I was soon dead to the world. When I woke up, I took the meds but still felt a little nauseous. I forced down some crackers for dinner, which actually made me feel better, and then I even ate a little bit of Lou Malnati’s. We went to bed pretty soon after that and I slept like a rock again.

I woke up this morning and felt amazing! That’s lasted pretty much all day, which has been excellent. I’ve still been taking it really easy, so hopefully that’s the key to feeling good. Tonight I’ll be going to my alma mater St. Viator to watch my youngest brother perform in “Joseph and the Amazing Technicolor Dreamcoat,” so it will be nice to get out and do something normal.

My next chemo treatment is in two weeks and I’m not at all nervous about it. #DownWithLumpy was so effective in keeping me focused on all the support I have and not worrying needlessly about taking the first step in this battle. I can’t thank you all enough for being there in that way for me. Lumpy is on his way out!

konglumpy

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