The longest month
The first transplant
Beau Dudte
After getting the leukemia into remission, I got to be home for several months while my doctor searched for the perfect match for my transplant. Typically they try to test any siblings first to see if they could be a match, but since I only have one half brother there was only a %25 chance that he would be able to donate. So they began looking through the national registry for my perfect match.
And while I have your attention, to become a match in the organ donor registry visit www.bethematch.com
When I returned home it was coming up on Thanksgiving. Which used to be one of my favorite holidays, but you’ll get to understand that. Some of my best memories revolve around cooking an assortment of meats various ways, usually a football game on in at least one room, and the house is full of great friends and family.
So this year we were going to host Thanksgiving for the first time, unless you count a Friendsgiving we did. So we got up Thanksgiving morning, we had the turkey thawed and ready to slow roast, at least 10 or so people coming over including my grandma, my mom and my dad for the first time together in my lifetime.
When I woke up in the morning I did my usual, sit up and self diagnose and then I could feel my dashboard lights starting to light up brighter than my old 95 Plymouth Neon.
I felt nauseous, tired, weak and my guts still hadn’t been great since the colitis. But of course I still tried my best to push through it, get the turkey in the roaster and pull myself together. An hour later as my wife was constantly checking my temperature it came back at 102. The one thing they stressed when I left the hospital was anything over 100.4 and you’re on the phone with your coordinator and getting a room set up.
So my dad stayed to cook the bird, Mandy called the family and said thanksgiving is postponed and we packed a bag to head back to the clinic. By the time we got there my wife had to wheel me in a wheelchair up to the room because I knew I couldn’t even make that short walk.
The first 2-3 hours is always the 100 questions for admissions, physical and vitals then just tube after tube of blood to start blood cultures. Sure enough it was another infection, which usually means at least a week in the hospital while they run antibiotics and fluids through you while watching your counts. This was just the first of several infections I would have over the next several months.
Each time dragging me away from my family, always feeling like I’m missing out on something, anything. “OMG this could be my last St. Patrick’s Day with my kids!!” Whatever it was, I hated missing out.
Eventually I finally got that call in April of 2018 saying that they had found a match who hits on all of the 12 points, I believe, that make up that perfect match. I was scheduled to come in at the end of the month to start chemotherapy once again before getting my brand new bone marrow.
Now going into this I had a basic understanding of the function of your bone marrow, but I’m sure like most people I had no idea about the random changes in your body when you expect to kill off every bit of that cell producing power house with poisonous chemicals that a nurse in full PPE is injecting directly into your veins.
Then, introducing and growing an entirely brand new immune system. You’re essentially a new born, so when you get your transplant it’s considered your new birthday. You have to get all your baby vaccines again, allergies may change, for instance mosquitos absolutely love me now, I imagine they look at me the way John Madden looks at a turducken, just a mashup of different flavors.
Also when I am poked by a fish, the next day every spot I was poked will itch terribly - imagine that, one of the side effects for an avid fisherman is an allergy to fish, go figure.
I at least had a basic understanding of how everything works and what to expect when I checked in this time. Shortly after checking in, they were ready to hook me up and start the first round of chemotherapy.
The chemo regiment that I was starting this time was similar in drugs but completely different in dosage. Remember before, we only needed enough weed killer to chop the tops first, well now we’re digging into those roots and in order to do that you have to go scorched earth and wipe out EVERYTHING! They call it hitting absolute zero, where your blood cells hit dang near nothing and you’re essentially being supported through transfusions of platelets, red blood cells, magnesium and pints and pints of fluids.
The effects of the chemo drugs both intravenous, and then of course another 10 spinal taps because they had found a very small amount of leukemia in my spinal fluid the last time that took a little bit of time to show up.
I was losing weight daily and since I was still thin and very lean, the weight I was losing was all muscle. I never had much junk in my trunk but I always thought I had some thick thighs and was a pretty fit guy. After rounds of chemo if you took my picture in black and white you’d think I was being liberated from a 1940’s German prison camp.
Then came that morning I woke up and I kept feeling a hair tickling my face. After wiping my face a couple times, I ran my hand through my hair and pulled back a fistful of soft hair. So I ran my other hand through and found the same thing. Ok, so yes I’m one of those weirdos that loves peeling sun burnt skin. If you know you know. If you think it’s gross, you just haven’t peeled a big enough sheet!
So I sat on the edge of my bed just gently pulling my hair out. When I got to the point that I felt I had gotten all the loose hairs I got up and looked in the mirror and couldn’t help but laugh because I knew my buddy at work, who was one of those unfortunate souls to be balding in his early 20s was going to love it!
After getting settled in after a few days I started to walk the halls, because there’s only so much daytime tv one can take in a 12x12 room. It didn’t take long until I started to stop and talk to other patients and their families. If they were in the kitchen I’d always say hi and strike up a conversation.
On one of those days I met such a nice lady. We began talking about her husband and how hard of a time he’s having. So I told her I’d love to come talk to him, my wife and kids couldn’t be there every day with school and work, so I got bored and lonely too with only talking to nurses. I started just stopping into Thoms room to talk and have coffee but soon after I began meeting others that Thom and Dee had gotten to know.
So we began all having coffee in the mornings in DeeDee and Thoms room just talking. Talking about our lives, families, careers, hobbies and whatever ridiculous thought popped up. Every day it seemed like our little coffee group would grow by a couple. First there was Rosie, an outspoken older Italian lady that told you exactly how it was, then there was Randy and Lori who’s whole family invited me in for cake on Randy’s new birthday after his transplant; there was Mavis and Konrad who despite our age gap of nearly 40 years I felt I had an instant connection with.
This man had experienced more medical trauma throughout his life but always came out with that never say quit attitude. The entire length and width of his torso ran a cross of thick and aged scar tissue from previous major surgeries. Despite it all he maintained such a positive calm outlook about it all.
You just have to take everything as it comes and just know that tomorrow could bring something entirely different. Which is how I’ve always looked at adversity and might be why we connected so well.
All of these people played such a huge part in just me keeping my attitude and my spirits positive.
Those were always such pure conversations, we were all there with a mindset of we have nothing to lose at this point, we were all just trying to survive one day at a time. When you’re in a situation like that it makes you open up and have honest heart to heart conversations with people you ordinarily might walk right by.
For me, it was great because I’ve been known to just walk up and have a conversation with anybody and talk for an hour like I’ve known them for years. With my natural ability to do so coupled with how tremendously those coffee and convos in the morning with such amazing people had helped me, I would go out of my way to stop and talk to other patients. Whether it was just 10-20 minutes, an every day meet up in the halls, or a friendship that lasts even after either of us leaves that floor.
Just having people I could talk to that were going through similar things that I was couldn’t compare to anyone else really. I could talk to my doctors but they’d give me the same cookie cutter answers that tell you just what you need to know. I could talk to my friends but they don’t get all the nuances that make up my day to day life. Of course I could always talk to my wife all day but she wouldn’t fully understand. Just like I couldn’t fully understand her side of what she was dealing with. The kids, the running, trying to work a full time job in between having to take time off every time I spiraled, the cleaning, the laundry, the homework, the dinners…..oh the dinners (I’ve been known to be the head cook of the family) but on top of that she had to try and get up 2-3 times a week for a couple hours so the kids could see me.
I know there was several days throughout that month, she would bring the kids up, curl up in my hospital bed and just nap for a couple hours while I took the kids down to lunch in the cafeteria or played board games in the family room.
The physical side effects didn’t really hit until my counts started to drop and that’s when I got the actual cell transplant. On May the 4th (I’m sure you star wars fans would appreciate that) they came in with what looked like an ordinary bag of blood, hooked it to my catheter and within an hour or so the doctors job was nothing but maintenance and a watchful eye waiting for anything to come up.
For such an enormous moment in my life it really was one of the most anticlimactic finales!
All I could do was slide my back down that hallway wall, until I was just sitting there on that cold hard tile sobbing and thinking, as of today I’m cured, we just have to wait a few years to confirm that.
I knew it certainly wasn’t over but that major battle has been won. Now it’s just time to clean up the rest.
At this point I began that final dive to my absolute zero. You never know how fast those numbers will change from one day to the next. So you could go to bed one night feeling halfway decent and then the next morning it just hits.
Forget being hit by a Mack truck, it was an entire fleet rolling down 71N.
I hurt in places I’ve never hurt before, when I would shake my midsection just getting out of bed I could feel my insides moving and aching as they almost felt detached from my body. They would be pumping 200-250 ml/hr of fluids through me to protect my kidneys, bladder, and liver, but no matter how much medication and fluids my bladder was still in rough shape, to the point I was peeing blood.
The last thing I thought about was eating anything, and if I did everything had a plastic or metallic taste or would be coming back up shortly after. Similar to the descent the climb back up is just as unpredictable. There was a chance that the graft wouldn’t take and my numbers wouldn’t recover. At which point I would be looking at booster cells, longer stays or even a second transplant.
But around day nine or ten after my transplant my blood counts started to come back up. Slowly at first but with each long and miserable day came better and better news.
Unfortunately Thom wasn’t so lucky. Him and his wife Deedee had been in the Cleveland Clinic from October 2017 to May 19th 2018. He was diagnosed with an extremely rare and aggressive leukemia that just fought off every effort the doctors made.
Imagine, watching every holiday go by from that same hospital room, every time you think you’re gonna get good news it’s quickly dashed by blood counts plummeting or another fever.
Thom got to go home at one point where he got to sleep in his old bed with his loving wife and walk out to his wood shop he was so proud of. Within a couple of days he began having fevers and his numbers began to fall.
I woke up one morning to the news that Thom came in late last night and unfortunately didn’t make it through the morning.
It was amazing the bond you can form with a person over such a short amount of time. I still have the wooden sail boat he and Dee went down to the gift shop to buy me when he found out he was going to get to go home for a bit. I promptly named it the SS Thom.
That experience really hit me hard, seeing someone you genuinely care about not recover from a similar disease you have. This is no longer just that story I’ll tell to my grandkids one day but a story I hope I get a chance to really explain to my kids one day.
After a few days my counts began to come up, slowly at first but then each day they would double and double, each day I started to feel a bit better. I was finally starting to eat and walk the halls, briefly, but out of my room nonetheless.
Those next couple weeks seemed to just drag on. I had a couple minor issues that would pop up, but nothing a heavy dose of antibiotics couldn’t handle. As the days went by all those folks that brought me under their wing were beginning to be released.
As amazing as it is to watch others reach their goal of walking out those doors it still makes you a little sad losing those ones that helped get me this far.
Finally, 29 days after I came in I was FINALLY allowed to be wheeled out of those doors with my wife pushing me forward like she had done since it all began. As excited as I was to finally go home and sleep in my own bed, had I known what lay ahead I might’ve just stayed in the hospital. Sometimes the cure can be worse than the disease.
My celebratory trip to Red Lobster when I finally got out.
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