Trip to the Grocery Store

I recently took at trip a grocery store in Syracuse with some friends.

Now, in order to get around, I used one of those motorized carts. I’ve used them before; after chemo in 2007, I would regularly use them for two years and slowly got better enough that I didn’t need them anymore but occasionally when I was really fatigued, they came in handy.

This cart seems fairly charged; that’s a problem, as sometimes they are not fully charged and will die right in the aisle. Not such a big deal in 2007 to 2009, as I was at least mobile then, but now it could be a disaster. I would be stuck.

I’m going just fine through the produce section, and all is good. When you are not mobile, to be mobile at all – even with a grocery cart – is a great thing. Past the potatoes and apples I go, and I see sliced watermelon in a plastic container that is way too expensive, but decide to get it anyway. It sounds good, and anything I eat these days is a plus.

Into the basket it goes. Then I of course realize if I am to eat it, I need a fork. Simple enough, I go past the deli and the soup section (only spoons there) and over to the section where you can buy pizza and sit and eat it, but the plastic silverware is over on the other side with tables and chairs between me and it. In one of the chairs is a worker eating pizza and apparently on break, playing her phone, and by the silverware is a guy doing the same, but he is a customer.

I try to maneuver the cart around the furniture but get stuck. The cart will go backward but not forward. I’ve seen this before; don’t know why they work this way but that’s how it is. When I go backward, the cart goes Beep, Beep, Beep as if this is a huge Caterpillar tractor on a construction site. I can only go backward, and with every thrust to the rear, we hear Beeeep, Beeeep, Beeeep. The worker eating their pizza looks up at me but apparently doesn’t want to interrupt her break to help me. We back up, and I am stuck. Beeeep, Beeeep, Beeeep. I try to forward to get out, but it will not go forward. The guy near the silverware looks up and decides to ignore me. The worker eating her pizza is actively ignoring me. Beeeep, Beeeep, Beeeep I am backing up but getting no place. I am not an inch closer to my silverware either. Things are not going well.

We are backing up and then trying to go forward with no progress, but eventually I do pivot enough to get free, and the cart actually goes forward. I point the cart into the open spaces, where it goes forward with ease, and think of how I am going to get my silverware now. I have an idea. Rather than me get to the silverware, I will ask the friendly food service worker to get it for me.

There is a lady in front of me ordering pizza. He takes her order, and she is a take-out. That leaves me, and I ask if he could get me a fork from over there.

He is not delighted to be engaged in good customer satisfaction, but does it anyways. The worker who was eating her pizza has finished but couldn’t care less either.

He gets it, hands me two forks, and has done his duty. I thank him.

Off I go.

Now, I go by the donut section and decide I would like an old fashioned donut, which is good with tea. I pull up to the get-it-yourself donut display and get a tissue and a bag, open the door to get the donut, but the door hits the cart armrest so I can’t open it all the way and – anyway – the donut happens to be on the top shelf and I am way down here, so the question is: how do I get the donut? I sit for a minute but realize I have a problem. I do wonder if someone is watching and might be moved to help me, me sitting there with the door ¾ open and stuck on my cart’s armrest, me looking up plaintively at the donut that is not being had, but apparently no one is around or cares. We think about the situation for a minute or more, and decide there will be no old fashioned donut for me today.

The rest of the time at the grocery store went ok. The cart was charged enough, and I didn’t get stuck in an aisle in an awkward position. What would I have done? With this grocery store, I could have been there all day, and when the night crew came on someone might have said, “Hey, what’s that guy doing in aisle 12?”

“Don’t know. He’s been there all day.”

“Should we do anything?”

“Nah. We might get in trouble if we get involved. We can just mop around him.”

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https://activechristianity.org/

What This Blog is All About

About my condition

Landing in Primordial Earth

Words are not sufficient to describe losing all functionality in a single day, and out of the blue at that.

I have mentioned this before, but would like to give you, an upright biped, an idea of what it is like, if you have an interest in knowing. It is like nothing else on Earth, when suddenly you can’t get out of bed to use the bathroom nor can you even go get a snack or drink on your own. And if an object is out of your reach, forget it. You have to ask for help with all this and, indeed, with everything.

Symbolic of my life now, but its a good life

It’s as if you have fallen through three levels to Primordial Earth (The name Middle Earth has already been taken by Tolkien) and land in a strange place where everything is lived in a different context. Formerly, you ran around with thoughts in your head about how you were going to organize the day, where you had to be when and for who, and what you had to accomplish in the day to keep your life from not falling apart completely – bills paid, kids fed, garbage taken to the dump, animals de-wormed etc.

All that is gone. You live life now concerned about your hydration and your bowels, and a big part of the day is taking the right meds at the right time. You have a big pill box – four layers deep, not just Morning and Evening either – and this you live by. You think about your tube feeding, how long you have to be on it each day to get enough calories – and are you getting enough calories?

And then there are the nurses. Can anyone tell me why all nurses are concerned about your bowels? I think they all have a primal complex about these things that only Freud can explain. I know several who were positively excited that my pee was a light color. I really don’t get them.

Along these lines, I’ve heard the poop talk so much I’m determined to have the sleekest, best bowels in all of Central New York. I actually went shopping yesterday and the most important thing on my list was prune juice. You know life is going downhill when you highly value prune juice.

It’s a world of small frustrations not known to normal, upright mortals. If a candy in a nice wrapper falls on the floor, I am dead. I can look at the candy, and it can look and me, and we can go back and forth for hours but I can’t do anything to get it. If something blocks my wheelchair in the hallway, I’m stuck unless someone helps me.  I can see a blanket across the room but can’t get it.

(Don’t get me wrong. My family is top notch and takes very good care of me. It’s just that these are obstacles we face.)

It is a world where you don’t accomplish much in the day except staying alive. You are on a feeding tube 14 hours a day. (My weight is 132; in the depths of Chemo in 2007 I was 137. When I sit on a hard surface, I can feel the bones in my butt. Listen up, ladies: be thankful that you have padding on your butt. It’s a good thing.)

Its a world where you are taken out of the world.  There are no schedules, and you don’t have to be anyplace.  Ever play croquet, and you put your ball up to another and Wham, you send the other fellow’s poor ball flying?  It’s as if I’ve been sent with a big WHAM right out of the yard – indeed, deep into the woods, lost.  Just sent.

It’s a world where getting outside with the trees and huge, blue Fall sky is like dropping acid. And if you get a visitor, life is really good. If someone walks you down the road, you feel as if you have just crossed off the most important task on the To Do list that you had in your previous life. Riding in a car is epic.

It’s a world of staying out of pain.  Pain is always bad, and you have to stay out ahead of it and manage your meds with some finesse.  In the midst of my brain tumor, I got shingles from another tumor in my left side  that activated the dormant virus in my body.  All this was very poor planning on my part.

It’s a good life, though. Don’t get me wrong. And no feeling sorry for me. I am a king. I have all the friends in the world and a fantastic wife and family. I wouldn’t have it any other way (well, I would like to walk to the bathroom by myself, but I’m content with my lot in life – very content.)

—

https://activechristianity.org/

What This Blog is All About

About my condition

On Being Dragged Back In…

[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 25^th wedding anniversary celebration on August 25^th 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.

What This Blog is All About

I would like to review what I am trying to accomplish with this blog with all my dear readers.

First, I thought it would be interesting for people to know what it is like to live with Stage IV esophageal cancer – which is one of the worse cancers out there. I try to go beyond the mere physical aspect of cancer; indeed, the physical is the least important aspect of cancer in one way. Cancer comes with a huge toll in many other ways: emotional, mental, psychological, spiritual and otherwise. It completely disrupts ones life. This is what I have labored to chronicle for those who are interested finding out in what it must be like.

Me writing my Blog

 

Second, I use the blog to communicate where I am with my cancer and treatments. There is one of me and hundreds of you, and it’s exhausting to text everyone “how I’m doing.” With this blog, I can let everyone know just by hitting the Publish button once. Also, rumors get started, and it gets back to me that the doctors are considering replacing my brain with that of our Boxer\Labrador dog – crazy things like that float back to me, so this blog helps keep the story straight.

I do not want any sympathy or pity. Back in 2007 when I was first diagnosed, I hated it when anyone would pity me. If you intend on doing that, unfollow me on Facebook and Instagram and never talk to me again. I’ll go for compassion, but let’s not cross the line.

I write from a Christian perspective. I will write from no other perspective. If I wasn’t a Christian, I have no idea where I would be on this journey, but I know it would be no where even close to where I am now mentally. If there is anyone I need to preach to or at, it’s me.

I try to interject humor at times as appropriate, and I hope you get my humor. I’m in trouble if you don’t. My belief is that if you don’t have humor getting through this stuff, you are in big trouble. Losing your sense of humor is a sign that bad things are happening in the inner life.

Finally, I love to write, and I hope you enjoy the blog.

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p.s.  WordPress is a free service, so if you see advertisements, I am not responsible for that.  A few people have said they were questionable in content at times.

Abnormal Times\Normal Things

Its difficult to keep things on a normal footing when everything is abnormal in your life, but I’m trying.

There was a wedding this last weekend. “Do you think you should go?” my wife asked, as wives will. She is not only a wife but a nurse – which is worse. (Generally, you can’t say anything to a nurse and be right.)

“I’m going,” I bellowed. This was sheer stubbornness; I wanted to go and would. It was decided and finished. Period. Of course, when I said it, I knew the big man upstairs would have to agree, otherwise I would not be going no matter what I wanted.

But fortunately I did go! It was a great wedding and a great couple. I’m glad I could be along to celebrate with them.

For myself, just to do something normal like this was medicine.

The next day my two big sons walked me down the road, one on either side of me so I didn’t fall. Outside! There is such a thing as Outside, with trees and a corn field and a big, blue fall sky above. Walking back to the house, I laid on the grass for a long time and looked up at our huge, billowing trees sway above me. It was like being on LSD. I mean, here I was: outside!

Me on the lawn outside our house

Every Sunday I play cards with some friends, and did so this weekend also. I think we won a few games and lost a few. I forget. But just sitting there with friends, chatting as we played, was fantastic.

The thing is, you don’t want the illness to totally define you and swallow up your entire life – if you can help it. It’s not healthy. So pushing yourself is not always bad but in a lot of ways keeps you going.  Cancer is as much a mental thing as a physical thing.  That’s the take-away.

When Positive Thinking Isn’t Enough

I’ve thought for years that cancer is about 70 percent mental and 30 percent physical.

There is the cancer diagnosis, and then how we think about the cancer diagnosis. There are the cancer treatments and the treatment’s effects, and how we think about these treatments and their effects. First there is the physical, and then there is the mental.

When you drive around, you see bumper stickers that say, “Cancer sucks.” I don’t happen to believe that, but lets say Cancer is not the first choice for my life, if given the option. Like, on the checklist of what I think I need, “More money” or “More wisdom to raise these teenagers,” or even “More food to feed these teenagers” would be near the top, but not “Cancer.” That wouldn’t be on my list, but it happened to be on God’s list eleven years ago.

But cancer is not easy, even if it doesn’t “suck.” How we react to the cancer is everything, for in this we have the possibly to take a situation that is bad in an Earthly sense and make it worse – much worse. How much worse? I would say seven times worse, but that may not be mathematically correct.

How do we make it worse? Well, we can always throw a pity party and a grand one at that. Then the Earth opens up and down into the depths we go, and it doesn’t take long. We have shot ourselves in the foot, knowingly stepped into a bear trap, stepped out in front of a train. And it does’t end: we become addicted to our funk and usually end up in even greater darkness than we began with.

Another way to do yourself in is to ask the question, “Why me?” Well, see how long it takes to get an answer to that one! Round and round we go, like water swirling down a drain, until we get sucked into the sewer system with no answer, still wondering why all this happened to poor me. Similarly unhealthy thoughts go like this: “God is punishing me.” Resist that. It is not so.

A few weeks ago, in one day I became a semi-invalid and was total care. Nothing prepared me for this, I could not have imagined it, and it was an emotional catastrophe. That was the day I crawled down the hallway to the bathroom and even with this, my mind would not work right and kept careening me into the wall to the right, and I could not stop it.

The only thing that helped me is these verses that kept going through my mind:

Whatsoever is brought upon thee take cheerfully, and be patient when thou art changed to a low estate. For gold is tried in the fire, and acceptable men in the furnace of adversity. Sirach 2: 4-5.

Without those verses, I don’t know where I would have been – perhaps off someplace in the outer constellations of emotional angst, trying to figure life out without ever succeeding in the midst of being a total wreck.

Then there is something called positive thinking. I hate positive thinking. Positive thinking is where you try to convince yourself of something that you don’t really believe anyway. “I can’t walk, I use a urinal and my wife has to dress me but at least I can still blow my nose.” That’s positive thinking. Usually positive thinking ends up in negative thinking, because that you can still blow your nose just isn’t enough to make you really happy.

These cancer lessons, however, carry over to other areas of life, I bet. Things happen in life, but how do I take them? And what does that say about me?

Skydiving Anyone?

Just a general update, as some are asking for it.

Things are going well, and day after day passes in basically the same way: changing scenery from bed to living room\kitchen area and back again, working on simple tasks such as staying hydrated, eating and pooping, listening to music and reading. It is a simple life, and gives a lot of time to think.

Regarding symptoms, they are as severe as ever. When I walk, my brain pushes me in a direction and won’t let me go. Sometimes it’s left, sometimes right and sometimes straight ahead. When all this was just starting, I was in the shower one time and suddenly my brain threw me up against the wall and wouldn’t let me go. I was stuck with my cheekbone grilled into the wall.   (After that, I was more careful.) It’s always interesting whether it will be a left day, right day or straight ahead day.

Just moving my head position in bed is monumental. How can I describe it? Dizzy is not even close. When I turn over, it’s as if a third of the stars come crashing out of the heavens to the Earth. So the strategy is simple: don’t change position much. The same goes when I sit out in the living room: look straight ahead, focus, and things are just fine.

It gets worse, though. When I get into bed, my brain cuts out, as if the motors to a drone are cut mid-air, and down I go. Even after I lean back against my pillow, I feel as if I am still falling, falling, falling. I know I am not, but it feels that way. It is sky diving without the risk.

My hand motor movements are worse than before. I can’t put a cup down on the table cleanly. Well, I can but I have to think about it. You shouldn’t have to think about it. I grasp things just fine but am jerky – just a bit. Perhaps others don’t notice it, but I can in my brain.

From all this we can deduce that my brain is really messed up. None of this is really hugely distressing, it’s just weird. It’s also understandable: I have two honkin’ huge tumors – both a inch long and egg-shaped – in a small part of my brain that controls coordination: the cerebellum.

The thing in all this patience. We have to wait, and I’m planning on a month. Just how it is. Until then, happy skydiving!

https://activechristianity.org/

 

The Monastic Order of Saint David

I have decided to start a new Monastic order, the Order of Saint David of Cato, NY.

Let’s just say that I live a reflective life now. God has, in his great mercy, taken me out of the whirlwind of life and set me squarely in my bed where I happen to spend a lot of my time these days, though I do occasionally move to the kitchen\living room area for a change of scenery. So we have a lot of time to think, to ponder, to pray.

It is really a great opportunity. I am alone with my mind a lot; I have nothing to accomplish and no where to go. I don’t need to arrive anyplace. There’s no real schedules, and my projects are quite minimal. When I was at the Kevin Guest House, for instance, I remember the big accomplishment for the day for me was clipping my fingernails. Hey, don’t laugh: it’s something!

Things come back to me. I met a gentleman a year ago who for some reason told me that his teenage daughter, who was quite happy and well-adjusted, suddenly one day tried to commit suicide. That floats back to me, and I can pray. Other things in my life – and people – whose needs I was marginally aware of I can now reconsider and pray about; often, when you talk to someone for even five minutes, you can get a sense of the need they are in.

We often live life so fast, we rarely stop to examine what we are doing, where we are going, and why. We are not sufficiently quiet to hear from above to make those tiny course corrections that may seem unimportant in the grand scheme of things but actually may save the day. “Ponder the paths of your feet,” it says in Proverbs. But if we stop and ponder, perhaps we can hear something simple, perhaps just to address that child in a more uplifting manner – something so small – but perhaps this alone has consequences that are monumental.

So you are praying for me, but I might be praying for you if I remember you.

Being part of this new monastic order has other benefits. You get to look back on your life and see where you’ve blown it and where you’ve succeeded, all in the light of the spirit. God’s word says to think soberly (Romans 12) about these things, and that is important. We cannot change the past, but we can reflect on who we are and what we have been, and get new insight on how to navigate the future.

It’s completely free to join the Monastic Order of Saint David, but there’s only one catch: you have to get brain cancer to join. It’s a good life, but are there any takers?

Giving Up

I’m home now, but I am different: I left a normal mobile person and returned a semi-invalid. So the question is: how is this going to work, with a big family and all?

The answer: just fine, as long as I give up.

By giving up, I mean letting go. Before I was engaged in the family: making sure my little boys did their homework and got to bed on time, coordinating all the details of our busy life with Angela, trying to keep some order in the place so all of us didn’t fall down the rabbit hole together, finding money every month to pay the bills and buy groceries for all these teenage boys, etc.

That is history. Now I cannot get out of bed by myself, I use a urinal, if I want a tissue and none is nearby, I have to call for someone. I cannot go look for food in the refrigerator. My wife has to dress me.

Although I am engaged in bigger family decisions, now most of the time my attitude to much that goes on is, “Whatever you think best, dear. Do that.” It’s good for a proud person like myself to say that and mean it; I suggest every guy go through what I am going through at least once in his lifetime. We want control and to have control, so to yield control to someone else is very, very good for us – at least for me.

Along these lines, I had a good July; I had energy enough to hike a small mountain in the Adirondacks with my younger boys, and I did other active, physical things. So after my radiation in April, it seemed that I was getting my energy back. I was looking forward to a good August and hoped to do some fun things at the end of summer with my younger boys and also to expand my little IT business in the fall of 2018.

My goals now are somewhat less grandiose. I would be happy – yes, ecstatic – if I could just get out of bed and use the bathroom without help. Just to walk down the hall by myself: how awesome would that be! To walk into the kitchen and find some food for myself without bothering anyone to get it for me. Wow!

We’re talking about giving up again. Letting go of what we thought our life might be and getting on with the life that God has for us. It’s a good life, but the key is to give up and let go.

This is not like some zen-like signage in a gift shop meditation exercise, but rather the result of a fire that has taken away my body and bent a strong human will, but I have to be willing for that will to be bent. If I am, all is well; if not, then not, and there will be bitterness.

It’s amazing what God has to do sometimes to turn us around.

The Gulag Archipelago PDF

If you would like to read the chapter I referenced in my last blog, click on the following link to download the PDF:

https://www.dropbox.com/sh/795nv636ppdzokv/AABgc645s7aWrQqe6hmWhtFja?dl=0

Although what the author says isn’t the exact understanding of Christianity I believe, I have always found it edifying to read and gave me something to think about.  You, for instance, don’t have to be in a Gulag to be saved to the uttermost, although it can help.  Normal daily life can be enough just as it is (that in itself can be like a Gulag!).  Still, I think there are many valuable insights to be found in the chapter.

I believe this is in the public domain, and I got it easily off the web.  Let me know if there’s any problems downloading the PDF.

Dave