Round 1: Remission Doesn’t Mean The Same On The Leukemia Floor

How we passed the little time we had together, boardgames!! Notice Shayla Bear hanging out on the table!!🧡

Round 1: First step, knocking down those pesky weeds

Beau Dudte

When I first got to the Cleveland Clinic I had no idea what was in store for me. I just assumed I'd have chemotherapy, I'd feel like crap for a month or so and if all goes well I'd be in remission and carry on with my life.

Beau at the Cleveland Clinic Leukemia floor

Well I soon found out that the first step was getting it into remission, but then the next and most important part was getting a bone marrow transplant to make sure it doesn't return.

As Dr. Sobecks put it many times, over and over, imagine you have a garden and the weeds start to grow, if you don't do something about the weeds they'll eventually take over the entire garden. As we all know, if you simply cut the weeds it won't take long for them to grow back, but if you pull the weeds with the roots, they won't be able to return.

Sounds simple enough.

Of course what wasn't explained was the amount of poisonous weed killer that would also go into the equation.

These two photos have a lot in common in Cancer World

Once I had settled into my new home away from home, my kids were finally able to come see me. The last several days they had been with family while we tried to figure everything out. The worst part about all of this was wondering how my kids are handling it all. What's going through their minds that maybe they can't express.

With the boys being so young, I wasn't worried as much. All they really knew was dad's sick and he has to go get better. My daughter on the other hand was going to have a much harder time adjusting to and talking about her feelings.

As a parent the last thing you want is for your children to worry about you. That's our job as parents, to worry and shield them from the harsh realities of life. That first visit did nothing but confirm what I was so worried about. The boys had brought some toys up with them so they spent most of their time playing and were pretty content.

My daughter though, always the daddy's girl, didn't want to leave my side.

Beau's daughter and sons snuggle into bed with daddy
during those early weeks at the Cleveland Clinic

She had brought her Shayla Bear, that she'd gotten at Build-A-Bear, and wanted me to keep it with me to snuggle with. So naturally that bear didn't leave my IV pole the entire time I was up there. Every lap I walked up and down those halls Shayla bear was along for the ride. Where I went that Shayla bear was going to be with me.

As they were gathering their things and getting ready to leave, the boys gave me hugs and walked out into the hallway. My daughter gave me the biggest hug and as she walked out of the door, she turned around and in the sweetest, softest almost reassuring voice said, Bye Daddy, I love you.

All I could do was stand there leaning against the counter in my room and smile back at her. When that door closed though I completely fell apart. I wanted to run after her and grab her up in my arms and just go home with her. Even while I'm writing this, that is one moment that I still get choked up about.

That little girl was doing her best to put on a brave face for dad so he felt better.

This trend would continue for the next few years as she would try her hardest to make sure I was ok - she kept her room clean, always wanted to get me water or snacks or anything she could just to help her daddy.

The next day, after having my hickman triple lumen catheter placed, which is essentially three lines hanging from my chest leading to the main artery in my neck that they can then have three different lines going at the same time without all of the pokes.

Scientifically, sounds good. But it also made me feel like I could get plugged into an 80s stereo to get surround sound.

After that I began my treatments, which was a mix of three different chemo drugs that I'd receive intravenously, an injectable chemo that was a shot into my belly and because leukemia can hide in many places where traditional chemotherapy can't touch, I had to have spinal taps, where they take a needle and shove it in between two vertebrae and draw about 5ml of spinal fluid from the spine and then replace it with another chemo drug. All the while tilting the table to the right angle to get the spinal fluid to drain properly. I would honestly wait there some days wondering if they’d have to smack the top of my head like a ketchup bottle. This was to make sure the leukemia doesn’t make its way into the spinal fluid then travel to my brain, which as you can imagine can cause a whole new set of problems.

Trust me, those were not enjoyable but thankfully I only had to do it about a dozen times or so.

To go along with the chemotherapy I was also given a very large daily dose of steroids. Prednisone was actually a large part of getting the disease under control, as it ramps up the immune system to hyper drive as the chemo kills the leukemia cells. Anyone that's had to take prednisone knows that it makes you wanna bounce off of the walls 24-7. Now adjust that 3-4 times the average dose and that's where I was every day.

I still have issues from the amount of steroids I had to take that first few weeks. From early onset of cataracts, weak and brittle bones and the thin and fragile skin of a 60 year old. Oh and even though my nurse practitioner tried to warn my wife to delete Amazon off of my phone, our bank account took a little hit from the 4am online shopping. Apparently she said it happens to a LOT of people when they’re on high doses of steroids for some reason.

When it came to the chemotherapy I was very nervous. What kind of complications am I gonna experience, how long will it take for side effects to start showing and of course how fast will I lose my hair? In order to get ahead of the hair loss issue we got a tip from a friend to make a game of it so the kids won't just walk in one day and I was just bald. We got a few cans of the spray on hair dye, colored my hair different colors and the kids helped me shave my head.

The funny thing was, after all of that, I didn't even lose my hair through that initial round! Which probably added to that sense of, I’m just gonna stroll right through this.

Right away I noticed the weight loss happening. Every day I would seem to lose a couple pounds here, a couple pounds there. No matter how much I tried to force myself to eat or how many laps I did in the hallway it was still just melting off of me. I walked in weighing the clinic weighing between 185-190 ponds and fairly muscular. By the time I walked out I was down to 140 pounds and nothing but skin and bones.

At this point I had been there for a couple weeks and was really just cruising right along. I only had nausea three hours after I would get the chemo injected into my belly, other than that and losing weight daily I felt perfectly fine. I figured well damn, if this is all it's gonna be I can handle this.

Then one night I woke up with what can only be described as a corkscrew being driven into my guts and slowly twisted. Well at first I thought ok what would grandpa always ask if I said I had a belly ache when I was little? Did ya poop today? So naturally I tried Pops’ method.

Then it seemed like every couple minutes it was just intensifying to the point of being doubled over on the floor.

When I managed to hit the call button the nurses came in and started giving me pain killers to try and ease the pain. They started with morphine and when that did absolutely nothing they switched to dilaudid but when that didn't even seem to dull the pain they brought out the big guns and gave me fentanyl. At this point I was in and out of it from the pain or the amount of drugs now flowing through me.

I can still see my father in law, who showed up at some point to visit, standing against the wall watching all of this and probably thinking, "I'm going to have to tell my daughter her husband died today".

At some point after the fentanyl was given I ended up passing out from either the pain or the drugs and ended up waking up the next morning in the ICU. I was told that I had acute colitis in my small intestine and that they were minutes away from cutting me open to relieve pressure before my small intestine perforated. Had they done that in the condition I was in with no immune system and a low platelet count I probably wouldn't have survived that first month.

Quick side story, and I know most people wouldn’t care either way but if you feel a certain way try not to judge. When I was brought back from the ICU, I was placed in a different room because they don’t hold your rooms, they just bag up all of your belongings and put it in the staff room until you come back and they put you in your new room. Well this wasn’t really a problem but unfortunately I had a pan of brownies, and these weren’t grandmas brownies, locked in my safe.Whether you agree or not, it is great for nausea , appetite and overall anxiety.

So what was I going to say to get into my old room and get this pan of brownies without getting caught??? So I told my nurse I left some very personal pictures of my wife in the safe and I needed to get them out!! I was told that their nurses are very professional and will get the key to get my belongings out. Shortly after, my nurse came in with a Cleveland Clinic police officer! All he said was, don’t worry, we get it, it’s not the first time but we do just need to verify that these are what we suspect so we can properly dispose of them. I told him yeah they are, but be careful and don’t dispose of too many at one time. He laughed and shook my hand and walked out leaving me to be known as the guy who got caught with weed brownies on the floor. Sorry back to my original point.

When I finally returned to the leukemia floor, my nurse Mary-Jane told me that they all thought I wouldn't be returning, but she stayed by my side that night holding my hand and doing anything she could to get me through until they rushed me down to ICU.

Four years later after checking in for my now third round with this damn disease, one of the first nurses I heard in the hallway was Mary-Jane asking if that was "our Beau" and of course came to give me a hug and tell me how good it was to see me, which I still chuckle every time a doctor or nurse says that.

After a couple more weeks I was on the mend from the colitis and I got the best news since it began, I was officially in remission with no signs of active disease. 29 days after I walked in those doors I found out I would be walking back out. After a lot of hugs and goodbyes I finally got to walk out of those doors and actually feel sunshine on my face. An hour drive home and we pulled into the driveway.

At that point I couldn't do anything but just sob tears of joy, realizing just how close I had come to not walking in that front door again.

I didn't have long to enjoy it because like Dr. Sobecks always said, we simply cut the tops of those weeds, the next and most important step was to go after those roots.

Little did I know it had only just begun.