Third Times the Charm
By the time Spring came around this year I was ready to just get outside and do all the things I enjoy doing. I always seem to have a bit of seasonal depression in the winter but this year it seemed to hit a little harder. Most of it I know stems from just not having a job or a place to just go five days a week. Sure there was the daily chores to occupy some time, but a couple months into the school year, when it starts getting cold and nasty and my boat’s sitting on the trailer, there’s only so many times a person can handle answering that same damn dreadful question day after day…what’s for dinner dad???
I had told Mandy that when it came to this summer, it was going to be the summer of me, not entirely in a selfish way, I wanted us to go camping, swimming, we had bought tickets to Kings Island for the kids for Christmas, but mainly, if it’s nice in the morning I was going to be on the lake fishing. I’m sorry if I slack on the household chores but this is one of the only summers going on five years that I’ve felt healthy or that hasn’t just been cut short by my doctors. So we’re going to enjoy every minute of it!
The summer started off great. In May, after over a year of jumping through every hoop that the courts required in order to adopt a child that had been our son for eight years now, we were finally able to to officially call our boy, Owen Anthony Dudte. To me, the adoption was something that was just to finalize it all, he’d be a Dudte which he said he wanted for a long time, and he’d finally feel like he belonged. But I don’t think either of us expected what it would ultimately mean to him. It seemed to happen almost over night, when we were sitting around the fire at our campsite he mentioned that he really wants to call us mom and dad but he’s kinda scared to. We told him he can call us whatever he wants it’ll never change the fact that we’re his parents, and we’re the ones responsible for loving him and raising him right. When they all three climbed in their tent that night we yelled good night, love you! Owen replied last with, “goodnight MOM, goodnight DAD!” With the most adorable little emphasis on mom and dad.
Since then, I feel like we’ve actually been able to see more of the real Owen. He was always just, defiant, always had something else to say no matter what you told him. No matter what we would have planned, if Owen didn’t want to do that, you were going to know about it. Once he was adopted though, he just smiled more, he was more appreciative, said please and thank you, offered to cook his favorite breakfast of dippy eggs and toast for the whole family and if he did mess up we’d get an unsolicited, actual apology from him. It was like he finally felt what he’d been looking for for so long, just a place he truly felt he belonged. Had we known how impactful that was going to be for him, we’d have pushed harder to have it done years ago.
We had also met a few more younger couples that also had young kids here in the community. So we were enjoying spending time with them tying up our pontoons in the middle of the lake, grilling burgers while the kids were jumping off and swimming.
It really was the culmination of everything I wanted when we first moved here.
Now I’m not a very superstitious person but I believe it was the middle of June when we woke up to the sounds of high winds, thunder and lightning that would light up the entire house. The electric kept flickering which would keep tripping our smoke detectors and the alarm on the box that controls the dogs’ invisible fence. Owen, who has always been terrified of storms, is losing it at this point, so Mandy sits with him while I try to turn off all the bells and whistles, and try to reassure him it’s just a little storm. As I opened the sliding glass door to shine my flashlight out into the storm, because I believe that’s 'dadlaw' during any size storm, I could see the wind and rain bending the giant maple trees in our backyard.
Luckily within 10 minutes it had blown past and was now just a light rain. In the morning I went out to inspect the damage. I already figured the tents we had just bought for this summer and set up for my daughters 13th birthday party were gone. We found one in the field and the other in the pond by our backyard. It took a few minutes but then I realized the trampoline we just bought the kids for their birthdays had up and walked off too.
When I tracked it down it was in a mangled heap with the four ground anchors still attached to the legs.
But it seemed like, ever since that storm, we seemed to hit one of those ruts in life that most people have. Those ruts, that when it rains it pours, kinda times. Over the next couple months we Would have our vehicles in and out of the shop four or five times, my boat motor inexplicably quit working so my weekday fishing explorations came to halt, since everyone else that has a boat also has a job that takes them away from it. It had gotten to the point where we were struggling to just keep up.
That spring we poured almost all of our savings into paying off my truck, because that just seemed like the responsible thing to do, not knowing that in the coming months it was going to be the worst time to not have a little nest egg put away. When you’re on a limited income that's not changing, it's a bit of a hit when everything starts costing twice as much as it did before.
Then the one thing I feared, my grandma who raised me and my brother for the first ten years of our lives passed away. She was the one I would always call when times were, well like they were at that moment. She was the one I’d call nearly every morning I was physically able to while in the hospital.
Losing her, although it was a bit of relief because she’d been in such poor physical health the last couple years, was still incredibly hard.
I’ll always remember that when I had to make those phone calls to family when I was first diagnosed, that was the one conversation I couldn’t even have -- I had to have Pops tell her for me because I knew I wouldn’t physically be able to get those words out.
But I also felt a small sense of pride knowing that I never broke the promise I made to myself, that she wouldn’t have to attend my funeral.
So my summer of “me” hadn’t exactly gone to plan, but that’s life. Rarely does anything go as we initially plan, sometimes you gotta just wing it and hope you come out alright on the other side.
Solid advice for things like parenting or golfing, terrible advice if you’re a diy mechanic.
My kids still gonna probably graduate high school even if dad, just trying to not look stupid, gives his kid a completely misunderstood synopsis of the YouTube video he just watched on 4th grade long division. My wife won’t be as lucky if I gotta do the same with a wrench in my hand.
So I figured on, kids are going back to school, football starting back up for the boys. I can get back into that and helping coach their team, since last year I was getting radiation and chemo before I got to even sign them up.
It was a few weeks before they start practice and I had to go to Cleveland that week for my monthly checkup and to meet with my doctor. After I stopped at the lab as usual to get blood drawn I went up to the second floor to meet with Dr. Sobecks, he started pulling up my lab results.
He noticed the white blood cell count had jumped up a bit, but he said we’ll have to see what your bcr/abl test shows when that comes back in a couple days. I thought ok, last time it had dropped from .0086 to .0065 in three months, so that’s great the pill I take to eliminate that is working.
The next day, one of the first things I do of course is jump on MyChart and saw the result was already back. I clicked on it and it’s just a single number 1.792, anything at .1 percent was considered a major molecular response. I might not know exactly how to read all of their tests but that is one that I fully comprehend.
I knew right then, it’s back. After I took a moment I called my nurse practitioner, who seemed like she’d been waiting for me to call. She said she assumed I had seen the test results and I told her I had. All I asked her was, “are we just gonna go ahead and assume it’s back?” When she said, pretty much, all I wanted to know was what our next step is.
At this point they didn’t need to explain much, after a while those words tend to lose their power over you. When a doctor tells me I have cancer it’s like the dentist telling me, “Mr. Dudte your two front teeth unfortunately, may never touch again.”
Within a week they had me in for more tests and another bone marrow biopsy to confirm what we already knew.
Mandy took this time the hardest out of all of us. Simply because there were no signs, no symptoms it was almost exactly a year since I had the last transplant and here we are back at square one.
The only thing I didn’t want to do was tell the kids that it’s back. I’ve seen that devastation on their faces twice before and I wanted to do everything I could to not put them through that again. But after talking to my wife, we decided that they needed to hear it from us, because at some point through this process they were going to find out and it’s better they hear the truth from us now than overhear a conversation weeks down the road.
So we sat them down and this time I was actually able to keep my composure when we told them and we tried to just calmly explain that it is back, but they caught it early and this time we're not doing large amounts of chemo, I won’t be gone for a month and although there may be days I don’t feel great, I’m not going to go bald and look all skinny and sickly and I would even still get to coach football.
There. Breathe in, breathe out.
Doing that I felt helped tremendously and we were able to get through it without a single tear.
The plan was to start on an immunotherapy drug called blinatumomab. We had originally planned to try this instead of the second transplant but unfortunately they gave me a course of chemo first which killed all active signs of disease, which the insurance company needed to approve this treatment. So a year later and now we get to try it anyways.
Within a week they had a bed ready for me up on the leukemia floor, for what I was told would only be three days to make sure I don’t have any adverse reactions to the medication and then I would return home with a little pump that continuously fed the medication through my port for the next 4 weeks. After that I’d get two weeks off, after which I’d start the cycle again for however many cycles they saw fit.
So instead of targeting the bone marrow itself we’re actually focusing more on the root cause of the disease, which was the Philadelphia chromosome that was triggering it.
Leading up to any hospitalization always brings up those same old feelings. Did I get enough done? What else can I do to make this time easier on everyone else?Even this time, that was supposed to only be a few days, I still found myself frustrated that I didn’t get the yard mowed! I mean I’m going into the hospital to start an uncommon treatment to save my life and the one thing I’m worried about is the grass? When we arrived, that same sinking feeling fell over us as we walked those same halls, past those same stupid paintings while music softly played, that’s somehow supposed to be calming and then rode that familiar elevator to the 11th floor. I looked at her and I just said, “Nope don’t like this ride!” To which she just smiled and dropped her head and said, “Uh yeah can we still get off?” After getting settled in and answering all their questions they began drawing blood to see where I was at before hooking up my IV pole.
When the labs came back the doctors unhooked the medication and started to tell me exactly what I didn’t want to hear. In just a week the disease had progressed way faster than they had anticipated. My white blood cells had doubled to over 30k and the blast cells, or leukemia cells had reached over %22. At these levels they now needed to slow down the medication because if the medication kills off too many blast cells too quickly I was at a much higher risk of of having some pretty nasty side effects that included trouble with speech and cognitive issues that could resemble a stroke and kidney and liver complications from a condition called tumor lysis where too many cancer cells are dying too quickly for your body to process.
This also meant that my three day stay just turned into nine.
To say I was upset would be an understatement, we hadn’t planned for nine days, I don’t even have nine days worth of clothes with me, the kids start school in five days, I’m supposed to pick them up from school and the boys’ first game was in eight days. I turned to my doctor at that point and said that’s not gonna work for me, I’ll give you until Tuesday but if nothing is wrong I’ll be leaving and we’ll go from there.
Of course after that first day I calmed down and realized I’m kinda being an ass and I just need to calm down, get through this and make sure I’m giving myself the best chance of finally beating this.
After nine days and finally getting used to the uncomfortable twin size bed, being woken up at 4 in the morning to get poked by those blood thirsty nurses, the nasty food and learning how to dance again with my metal beeping dance partner, I walked out of the Cleveland Clinic with only having thrown up one time when I first started my chemo pill and forgot to eat with it.
All in all I considered it a success and even got to catch up with some of my favorite nurses and doctors from over the years.
But cancer has a way of humbling you no matter how confident you may be, I went into this round confident as I could be, knowing I wasn’t getting chemo like the first two times, not staying long periods in the hospital, it’s no big deal I’ve been through worse. What I didn’t expect was all of those little things to really mess with my head like they did. The fact that now I’ve again got a line hanging from me for the next month, a pump I have to carry in my ultra rad fanny pack, just the feeling of putting press and seal over my port to try and keep it dry while I shower and the restless nights of waking at 3 in the morning and not being able to go back to sleep. That’s the thing that a lot of people don’t understand, it’s not just the vomiting from the drugs, losing hair and all of the muscle on your body. It’s those little things that are always there reminding you constantly, hey you’re sick! When you wake up in the morning and sometimes it’s not the first thing you think of but as soon as you stand up and feel the joint pains and the aches, it all comes flooding back, hey you’re sick!
Unfortunately when I got home, I started experiencing my first real side effects. For the first two days I had gone from no issues whatsoever, to bedridden with bone and muscle pain in my ribs and chest that there seemed to be no relief from.
If you’ve never experienced bone pain, it’s pretty awful. It literally feels like someone is twisting your bones to the point of nearly snapping them in half. By the time I had my follow up appointment I was sitting in my doctors office barely able to take a deep breath as the pain was too intense. He explained, unfortunately it’s a side effect that means the drug is doing it’s job but as it’s killing these cancer cells, it’s also irritating the bones and muscles so much that it creates an immense amount of discomfort.
Fortunately though, it will subside as the cancer cells are killed and discarded, so we just need to manage your pain until then. He gave me a prescription for oxycodone and as much as I hate opiates, I was willing to do anything just to sleep for more than an hour at a time. For the rest of that day even the pain killers I was given didn’t seem to even touch the pain, but around nine o’clock that evening, all of a sudden I realized, I didn’t really hurt any more. My ribs were sore but nothing like it had been the last couple days.
Then, just this last Wednesday I was even able to return to football practice to help the team get ready for their next big game this Saturday!
So no I didn’t get my glorious 'summer of me', and it ended with two pretty devastating events, but if there’s one thing I’ve learned over the years, you just gotta take everything as it comes and as long as you don’t throw in that towel you’ll always have that punchers chance and all you have to do is connect one time to change the direction of any fight.
So I’m just gonna keep on swinging till they count me out.
“Pain is temporary. It may last for a minute, or an hour or a day, or even a year. But eventually, it will subside. And something else will take its place. If I quit, however, it will last forever.”- Eric Thomas
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