[Per What This Blog is All About, I am here trying to give you an idea of what its like living with Stage IV Esophageal Cancer, assuming that you have an interest in the subject.]
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I have had two goals in the last eleven years: 1) To Serve God Wholeheartedly and 2) To stay out of the cancer world.
Let me recap my story.
Our family in 2008 just after Chemo
The date is 2006 and I have just finished a Master’s Degree in Health Systems Administration, got a better job as a manager at the hospital where I worked, and we just had our eight baby, Timothy. We can say it was going well in an Earthly sense but four months later I was diagnosed with esophageal cancer, underwent a huge surgery (my stomach is behind my heart now) and then underwent six weeks of massive chemo and radiation.
From this, we can see that sickness and cancer in particular disrupts ones life. This was a massive disruption; I had to quit my job and had a difficult multi-year recovery. At about the fourth year, I actually felt good enough to get a little part-time job taking disabled individuals out into the community. This was totally out of character for me; according to my DNA, I am a nerd, the Computer Guy, and would generally rather deal with technology than people. But it was good to be working again, at least doing something.
Still, it was a job, and I was working, and living life. Scans were coming back clear, and I remember at year six or seven, I was feeling good enough such that I wondered if I could possibly go back to work full-time.
That never happened. In year seven, 2014, I had my first re-occurrance, a spot in my lower left lobe. We ended up doing seven months of Chemo from Hell. To this day I know that that chemo wasn’t normal chemo: it was mixed in the third level of hell by demons and then sold to my doctor, to be given to me every Monday through my IV (port). I’m sure of it. Besides this, there was also a surgery to take out the tumor as well and a six week recovery.
As in 2007, my life was completely disrupted. I somehow managed to keep my little part-time job; I was too stubborn to let it completely upend everything as in 2007, but it pretty much did on a daily basis. I was back in the Cancer World, and big time. How do you know you are back in the cancer world? Well, you end up with a feeding tube – which I had, my second one.
The good news is that it ended, and I started living life again. I was not the same, though; there was no thought of going back to work full-time. My body had been beat up again, but still: I was out, and that in itself was great.
I had two more re-occurrances, but they were easy. Two more spots in my lung but Cyberknife treatments were able to take care of them. I could live life and get treatments at the same time, and the effects were not so bad: just some fatigue, as always. Fatigue is just a given in my life.
I got dragged back in to the cancer world again in 2017 big time, but in a way I didn’t expect. I had a CEA tumor marker that kept going up, so we did every test known to man but found no tumor. I was thoroughly exhausted by the end of 2017, and in 2018 we started it all up again when a tumor in my side was indeed cancer (biopsy in October 2017 said no), which led us to two weeks of radiation in April of 2018.
There is a backdrop to all this: I have eight kids and during this time, and not only kids but teenagers; at one time we had five teenagers in the house. So I really didn’t have time for all this cancer crap; I had a lot to be engaged in my life, and cancer was definitely a distraction. Also, we must remember that when my life was disrupted, so was theirs. It affected everyone.
Now we get to the good part. It’s 2018 and I’m out. I figure if I get dragged back in, they will find something on a scan and start up with some sort of Chemo from Hell. And, yes, that can happen at any time – just one bad scan and I’m back in it again.
But that’s not what happened. It came in a way I could never have dreamed of. It led to something perhaps even worse than Chemo from Hell: near complete disability.
This is the story. Angela and I have just had a 25th wedding anniversary celebration on August 25th of this year. I felt great at the party; of course I always deal with fatigue and was dealing with Shingles, so it wasn’t perfect, but still. I was living large, you can say.
The next day, though, I was dizzy and all the time. That is weird, I thought. I thought I might be dehydrated and fixed that but the next day was the same. I stopped my meds – perhaps that was the problem. (I was on some strong as-needed meds.) Still dizzy. I started slurring my speech at times but didn’t realize it, and when my wife told me, a light went off in my head.
I had to do something about this and not just anything: I had to go to the ER. You know things are going downhill when you have to use the ER, but I knew I could get a quick scan there without waiting two weeks for an appointment with my doctor. It was happening again. I was being dragged right back into the cancer world I had so wanted to stay out of. But I knew I had to go.
(To all you nurses, I know I should have gone sooner, but I also knew I wasn’t having a stroke. How did I know? I knew, just like I knew in 2007 that I had cancer before I was diagnosed. I knew.)
That was the start of it all. Then a week and a half later I lost all ability to care for myself. Suddenly, my life had changed, and radically. This was not to be a light Cyberknife affair where I could still live life and get treatments; no, it would be all encompassing. As in 2007 and 2014, I would eat, sleep and breath cancer. It would define my life, at least for the time being. And yes, I ended up with another feeding tube – my third – so when that happens, you know you’re deep in it.
What can we learn from all this? Sickness and cancer disrupts ones life, upends it completely in ways that are hard to imagine. But the good news is that it does end: we go into the cancer world, and we come out. Yes, I am looking forward to coming out of it this time – very much so!
So, God willing, I look forward to the days of just being boring old Dave Stahl, living my life on a very practical level: driving teenagers around (my destiny in life, it’s what I was born to do), trying to find money to feed my young, teenage boys every month, keeping the house from falling down around us. It’s really mundane but if you live with cancer, it’s fantastic.
God certainly does some interesting things in life, and when you live with Stage IV esophageal cancer, you have to be ready for anything, for any disruption and at any time! Back into the Cancer World you go, and out you come from it again, someday. It’s cancer – stage IV.
Cancer Chronicles 