The Financial Side of it All…

As I’ve mentioned in other blogs, cancer has many facets, and the physical aspect is what everyone focuses on but there are others: the psychological, spiritual, emotional, etc.

But there is another facet that cannot be overlooked: the financial.

Cancer is not cheap.

Just when you are dealing with an overwhelming illness, you often end up with financial burdens. I, for instance, am now out of work, and Angela has had to reduce her hours in order to take care of me. And then, if you are in the American Healthcare System, there’s no telling what crazy bill you will be getting for what uncovered service for what crazy reason at what absolutely crazy inflated price. I just got a bill from Roswell Park for $700. And then there’s the other copays.

Someone started a GoFundMe for our family, and I really want to thank everyone who contributed, whether a small or large amount. You have no idea what a help this is. We feel challenged just with the physical and other aspects of cancer; to be on the verge of bankruptcy also would be, well, a lot. May God get everyone of you back, and richly!

Roswell Follow-up: Update

On Tuesday Angela and I went to Roswell Park in Buffalo for my followup MRI, and I’m glad to say that everything looked good. I guess the tumors are dying from the inside out – whatever that means – and are “stable” which they say is another good sign, I guess. No new tumors – also good.

Thanks for everyone’s prayers!

It will, however, be a long way back for me. They once again highlighted how massive the tumors are – both an inch in size – and I am likely to have symptoms for a while. I do have good days and bad days, and my walking with a walker is no better than it was when I first got up on my feet and some days worse. This means that lots of patience is required on my part and by all.

We stayed at a new building at the Kevin Guest House – they are expanding.  It was very nicely done.

I have wonderful caregivers and now live an interesting life with this broken brain. God has gotten me through all sorts of weird situations over the years, and I know he will do so again. We will get something out of it for the good.  Rom 8:28.

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https://activechristianity.org/

What This Blog is All About

About my General Condition

How Sweet It Is!

I think this brain thing is one of the craziest things I’ve ever been through in my entire life.

One day I lost everything and a month later – like five days ago – things turned around. Then I suddenly realized I had enough balance to – believe it or not –  pee like a boy.  It suddenly hit me in the moment: I think I can stand and do this. And guess what? I did!

The implication was clear: I was more stable. I still had to be careful, obviously, but something had changed.

Me Standing On My Own – Wow!

Then two days after that, I was able to take five well ordered steps across the kitchen from the refrigerator to the sink without my brain going crazy and throwing me to the left or right; I was slow and careful, but managed it.

And that’s how it all began. Walking again. It’s amazing. When you lose your mobility, you lose everything. It is difficult to describe exactly how much you lose. I think a number above 99 percent would be close.

Now, don’t get me wrong. I have no plans to go jogging or start taking square dancing classes. I walk always reaching for a surface; getting around the kitchen, I’ll run my fingers along the kitchen table for reference and will often coordinate my walking by first hanging onto the refrigerator door handle for absolute safety, let go, then walk about four steps to the kitchen sink area, where I’ll grab the counter. But still, I have walked. And I still use the walker to get around even in the house. I do not want to fall.

All this begs the question: what is happening up there in my brain? The answer is: I don’t know. Probably the tumors are dying (hopefully) and the inflammation is down (again, hopefully), so now my brain can switch back.

But it’s great to be up on my feet like a normal homo sapien. Don’t take it for granted. It’s wonderful.

On Depression

I’d like to talk about depression. I don’t feel like I am depressed, but I do think that I could very well be because, well, suddenly, in one day, I lost everything – which could lead a person to be just a bit down perhaps.

The thing is, I feel as if I’ve veered on the edge of depression a few times but managed to get through it. My faith helped me, and I understood to “humble yourself under the mighty hand of God,” which means not to fight it. When you start fighting it, you’re in for a long, hard and losing battle. Then you are depressed.

But I’ve found I have to keep working at it in a very practical way. It’s easy for me to lay in bed, still for a long time, listening to music on my Amazon Echo and enjoying a distress-free time. If I keep my head still, it doesn’t do trippy things – which sets off my stomach – and also find a good position that doesn’t activate my shingles. So laying in bed isn’t just a lazy thing, it’s a survival mechanism.

Still, it’s really not much of a life either. And here I have to make a decision. I have to force myself to do something, even if it’s risky. The other day Angela and I went to see the movie Searching, and I went for a car ride another time with a good friend. Went to my son’s soccer game also. Normal things.

Big deal you say, but it is a big deal. Life is what you make of it, and we make decisions every day that impact on our mental health. We can jump into life and live it – even if it’s in a wheelchair and at a low level – or we can wallow. So as long as I’m jumping in, I’m ok. Stop jumping, stop living, and start down the black hole.

It’s a sacrifice, but a good one. And like everything in life, its a decision I make. Please don’t get me wrong: everyone is different, and I’m only talking about what happens to work for me. But I wish everyone the best in this battle!

On Being Strong…

There are some comments that people make about me regarding my cancer that I don’t especially like, and here is one of them: “You are so strong to go through all this.”

This is not so.

I am a wimp. I can handle nothing. Upon the least adversary, I fold.

And yet, I am still standing, somehow.

I will tell you the secret of my strength. It is very simple: I just don’t have my own resources to fall back on in dealing with everything that has come my way, but other ones as well. This is good; the reality is that oftentimes situations are much more than we can handle and when they drag on day after day, it’s even worse. It can easily seem endless and dark.

But remember, cancer is as much mental as it is physical, and perhaps more. The problem is that by nature we are wired wrong, I believe. What do I mean by that? Well, all of us has a certain amount of fortitude and desire to be good, but in the pinch there are limits. We can only take so much adversary, and at some point our goodness also runs out. When we can take no more, we complain, and often loudly. We can also become bitter, which is the worse state a human being can be in. And if pushed too far, we become no longer good but positively bad, all our justifications notwithstanding.

The key is to get new wiring. Now wouldn’t that be great! I think that is what everyone longs for but never quite reaches.

This is where the New Testament comes in. It is a book that will positively confound your every assumption about life. Up is down, left is right, big is little. Read it rightly, and your mind will be at once expanded and blown apart.

Let me give you an example. These verses, written by Paul 2,00 years ago. have saved my life as much as the Gamma Knife treatments I got at Roswell:

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships,in persecutions, in difficulties. For when I am weak, then I am strong.    2 Cor 12:9-11

Can you see it? Are you able to get it? Let’s just say that this is not a normal and human way of experiencing life. Who in the world delights in insults, hardships and difficulties? Go ask 100 people and see what answer you get. Of course you know what all 100 will answer. No one like adversary.

And yet Paul had it this way in truth and spirit – or he is a liar and fraud? You decide.

This is true Christianity, which is actually a help in all of life. I personally don’t need a dead religion of tradition and ritual nor a feel-good touchy-feely experience every Sunday that crashes on Monday. I need help in all the trials I am going through. I need a thorough re-wiring. I need the old ripped out and the new hooked up. I need to get new insides and above all, to be faithful to stick to the new and reject the old. Nothing else will do. Nothing else is Christianity. And nothing else helps.

That is the secret of my strength – which is actually Gods. It’s also completely free and the government can’t tax it! What a deal!

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https://activechristianity.org/

What This Blog is All About

About my condition

The Simple Things in Life

Is there anything more beautiful in the universe than this:

This is a wonderful walker that has changed my life! Before I had it, I was a prisoner in my bed; if I wanted to get out and do anything, I had to ask someone in my family to come, get me out of bed, and be with me as we walked down the hallway and into the kitchen\living room area. It worked, and my family was always great about it, but I had to ask.

Now, I can just jump out of bed (well, not really) and tootle down the hallway all by myself. I have to be careful, mind you; I do not want to fall. My head has been really trippy these days, so I go slow and sit down if I have to. But I am mobile – something fantastic.

I also need to walk. Sitting too much is really bad; I sense I am weaker and have lost muscle mass, so walking is the best thing for me.

Now, a month ago I would have laughed if you told me a walker would so excite me. “What,” I might have laughed. “You’re telling me I’m ready for the nursing home?” I hope not.

Let’s just say its amazing how thankful you can be for the simplest things in my condition!

It’s a Funny Thing…

It is 2007 and I’m laying in a hospital bed and know the score: 80 percent of people with Esophageal Cancer are don’t make it to three years, and few make it to five years.

God speaks two things right into my heart: first, if I’m going to make it, it will only be if people pray for me and second, I have to be willing to take all the worse cancer treatments.

 

Now, not only did I make it to five years, but I made it to ten and then to eleven. And this is only because of you and your prayers. I am forever grateful. You have no idea!!!

Prayer, though, is a funny thing. Take my condition now. It’s pretty straight-forward: you can pray that I am completely healed of these tumors and that the bad symptoms that have left me a semi-invalid go away. That’s easy.

I did have a life before Cancer!  This is me in 2006 at Boldt Castle!

Or is it? The question is: what is the best thing for me? Let’s take my semi-invalid state: I can’t get out of bed by myself. I would give my last nickel at this point if I could just get up and go to the bathroom by myself; just to go outside and get the mail – how much is that worth? The world.

So, it’s obvious that we can pray that these symptoms go away, and soon. But then again, we can turn the entire question on its head: what if sitting in this bed and having others do everything for me is actually the best thing for me? What if it gives me time to think about my life and about God, softens me and transforms me? What if it helps me to get something rare in this world and like gold: patience. Isn’t that good?

That is why prayer is a funny thing. We really don’t know what to pray for. Looking back on my life, some things that I thought were the best for me turned out to be the worst and the worst things turned out to be the best. We really don’t know what is best for us. And Per Romans 8, we really don’t know what to pray for.

But still, pray that I can be healed, the symptoms go away and that everything I go through transforms me for Eternity. Then it’s all worth it!

Being in the Disabled World….

Angela and I went to see a movie today at Destiny USA, which is a huge mall in the heart of Syracuse. The movie was good – Searching – and it was great to be out and just do something normal. Anything normal these days is fantastic.

But it wasn’t normal at all, in one way. I was in a wheelchair. I was in the world of the disabled – a place I have never been my entire life.

You must understand, I know of this place, and quite intimately. My sister has Cerebral Palsy, so I grew up understanding a disability and all that that involves. I also grew up twirling her canes and jumping around on her crutches – it was great fun to have such toys to play with as a boy! Do you see the nice wheelchair that I am sitting in in the picture? That’s hers – she loaned it to me, and is it fantastic.

It turns out that now I am in a disabled state and out in the community. This is where life gets interesting, because its one thing to observe someone who is disabled from the position of a biped, and it’s another thing to be the disabled person yourself.

We can easily look down and despise all these accommodations. Many public places have those stupid doors that open with a button, and when you press the button it always opens way too slowly, and if you just want to get in without pressing the button, the door is too heavy to move. What a pain.

These doors are not a pain if you need them to open in order to get into the building at all. If they don’t work, there you sit, looking through the glass at the inside of the building while you are on the outside, and there is absolutely nothing you can do to get inside, unless some nice person happens to have mercy on you and open a door. There are nice people out there, but many just don’t care either.

Another example bipeds might disregard is seating in the movie theater. The one we were at had a cut-out space where I could park my wheelchair and watch the movie. Not a big deal, but without it what would I have done? Let’s say the theater was crammed with chairs and a narrow aisle between them, with no place to park the chair. What would I have done?

After the movie, we found a bathroom in this huge mall that was “Family Accessible.” Great. The bathroom happened to have three – I count three – grab bars to make transferring to the toilet safe and accessible. Someone who has never been in a chair can no appreciate such a setup. Having something solid to hang onto is a life-saver.

Then there was a minor detail at the food court. My wife and I ate at a table specifically designed for a wheelchair on one side. We could actually sit across from each other and eat, as opposed to me forcing my chair sideways at the end of a table in an awkward alignment. This is not huge, but it does make life a bit more comfortable.

I have to say, I never in my wildest dreams ever thought I’d see this side of life. It’s a real eye-opener.

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https://activechristianity.org/

What This Blog is All About

About my condition

All Lights on and Flashing…

Its really interesting working with ones body on a daily basis these days, that’s for sure!  Hour after hour we are attempting to keep a symphony of bodily functions in operation so we can continue to sponsor life on this planet in the form of me.

Its complicated, lets just say that.

For instance, if I get into some serious shingles pain, I can take the big boy – Oxycodone – and feel great, but then that knocks out my bowels. That’s always bad news, and then I get the Bowel Police on my back (nurses). So we have to find another way since pooping is important and  I really don’t want the Bowel Lecture again.

But I need to get up and exercise, since that’s good for me, but then again I risk knocking out my stomach because I get sea sick just by walking, and once that goes I feel lousy and stop eating, both of which are always bad.   Even with a feeding tube, it is important to eat real food, as this is a mental thing – and with cancer, mental things are important.

There’s my feeding tube, which solves all these problems, but my body can’t handle a fast enough flow and I risk knocking out my stomach again and having less nutrition – which is always bad for yet another reason – I get weak.  So here we risk taking down another organ.

Then totally unrelated is the weather report in my head. The good news is that 97% of the time the weather is clear, but it’s cloudy the other 3%, and I don’t know why. Its difficult to describe. I can think but its as if you stuck my head in a fog machine, and all of the whiteness went into your brain through the ears and is now swirling. [As I edit this, the fog is drifting around my brain, but I’m good.]

The good news is that with the feeding tube, I can always be properly hydrated. I could put a gallon of water down my feeding tube in 25 minutes if I wanted to (of course I don’t ever do that much). “Boy,” my wife will say, taking my urinal. “That pee has a great color!” In my former life, I got honor by being the great computer guy who solved esoteric computer woes for small businesses. Now I get honor by the color of my pee. Times have changed.

Finally, we have my meds.   I am taking something every six hours for something – who know for what, we just down the multicolored and differently shaped pills without question.  Thing is, some have to be taken with food and others not.  So we just can’t eat when we want, we have to eat strategically in coordination with the med.    That alone is enough to make you dizzy.

So in all this my body is like a computer router, where a good sign is when all the lights are on and blinking. One light is Stomach, another Side (Shingles), a third Bowels a forth Hydration and Head a fifth so forth. Most of the time all the lights are all blinking – major processes are operational – and I am in no distress – something that I am very thankful for.  As long as all major organs are online and blinking, I’m good.

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https://activechristianity.org/

What This Blog is All About

About my condition