An update on what's going on with me (medically)

[Dana Hackney]

Hi Ed,

Man, I am so sorry it's taking so long to recover and to get any news back from the test results. I have heard that the med system is getting harder and harder to get the service that we once had. I hope things turn around soon too.

So, is the doc attributing all this stuff you are fighting to stress? I now that stress can do really strange things to your system.

We've got about everyone we know praying for you buddy and we will continue until your past this difficult trial.

That IS good that you have some appetite and we all WILL count that as a good sign.

Dana

[Doug Lester]

I sympathize with you as I've been on both sides. It's one thing to tell a patient not to let their imaginations take over before the reports are all in and another not to worry when it's your coconut that's going to get popped if the report shows a tumor, even if the type they're looking for is never cancerous. That's what I've been through

What you are going through is not unusual. The reason that it was so long between CT scan and the biopsy is that there was no reason to rush the process. Six weeks was not going to make any difference. I know that as we were growing up we would see people who had something show up on an X-ray and they'd be in surgery tomorrow or the next day. Usually there just wasn't any need for the rush and the doctors found that it was better to let everyone have time to prepare for it.

As far as the pathology report what's happening is not unusual. It takes time. Usually on the day of surgery the pathologist will do a gross examination of the tissue with any preliminary dissection that needs to be done. It's then handed over to a technician who will prepare the tissue for fixing and put it in a machine that will take it through the various baths. The next afternoon or evening the tissue will be sliced and mounted on slides and stained and will probably be delivered to a pathologist the next day for reading.

After all that the pathologists dictation has to be typed out, approved and signed, then sent to surgeon. Yes, work load does effect the speed of the results, especially with the transcription. For that reason the surgeon gave plenty of time for the report to come back before scheduling your follow up appointment. Remember that the surgeon also may not be in the office 5 days a week, some days are spent in surgery, another advantage of scheduling surgeries and not treating everything as an emergency.

Don't pay attention to those horror stories about medical care in Canada. It's been a few years since I talked to a Canadian about it but most seem to be satisfied with the system. Anyway, the last I looked, Great Falls was still on the south side of the border. Worrying about what goes on in Canada is just getting yourself all spun up over nothing.

I suggest that you do what your doctor told you-CALM DOWN. You really need to do some serious chilling. I know that you've been through a whole lot lately, which means that stress has been doing a whole lot better at dealing with you than you have dealing with it. You're only human with normal human limits and susceptibilities. Give yourself time.

Prayer's good. This is one Unitarian who believes in the power of prayer (no, we're not all atheists). I also believe in the power of listening for God's answer. Go somewhere you can be quiet, say your prayers then sit and listen. Don't listen for anything in particular and don't have any expectations, just try to clear you mind and listen. It takes practice and I could probably do that a lot more myself.

Be kind to yourself, listen to the doctors, and believe that this will get better.

May God be gracious and make His face to shine upon you.

Doug

[Chuck Burrows]

Ed - yep hard to calm down and also yep the wheels sometimes go slow....FWIW - I've been dealing with chronic and at times debilitating pain now for 30 years - 2 discs gone in my neck and three low in the low back and put through the wringer by the docs for 3 years before we had even an inkling of a solution . For 20 years I've been dealing with sever GERD (reflux disease) and for the last 15 years I've been dealing with a level 2 liver disease (one step away from cirrhosis) and again there were no real solutions. - I finally just took over and used both standard medicine and alternative methods to keep things in control since there was no "cure". Then 12 years ago my wife was diagnosed with breast cancer and we had a year of therapy to deal with, but she has been clear of that, so I reckon it was worth it although again dealing with the docs was at times a real night mare. Still stress levels went way up.
Then for the last three years I've been dealing with some other problems including extreme fatigue - being self-employed with no insurance and having been through the medical system wringer without at times a lot of help from them (but lots of bills!) I seldom go to the doctor. But last summer the fecal matter hit the fan - I started having severe lower abdominal pain - thought at first it was my back, but things just kept getting worse and the fatigue from the pain as well as the stress from not being able to work as needed and pay the bills began to be debilitating to the point of ridiculousness so my wife finally forced me to got to the docs.
A CT scan showed I currently had severe diverticulitis, kidney stones, gall stones, and I also had hypertension (BP was 250 over 120). On top of that it also showed I had had a silent heart attack and some strange lymph nodes in my chest and abdomen that could be cancer. Since both my mother and older brother had died from lymphoma at about my same age (late 50's) things were more than a bit scary. This all came on top off three bad years for the business (including several cancellations) due to the economy which made it harder and hard to pay the bills, again leading to increases stress.
Anyway I got some things like the diverticulitis and the hypertension "fixed" fairly fast both with meds and life changes, but it took three months to get a test approved for the possible big C (a PET test). and then three more weeks to get the results back. Well I'm clear of the cancer, thank the good Lord - the problem was due to scarring due to long term exposure to the chemicals being used in the various jobs I've had since I started working - also the reason for the liver disease (NASH) While that was good news I still have ongoing problems - the worst case of colitis the docs have ever seen (my entire colon is affected - usually no more than a foot or so is affected) and I still have extreme pain/fatigue at times - some days it just is hard to get out of bed - I just want to curl up and cry or scream STOP IT!.
Then to top that all off in November we were notified the land we had leased for the last 16 years was being developed and we either had to move our single wide mobile or upgrade to a modular - either would have cost 20K plus and that just was not in the cards so we lost our home - only 4 more years and we'd have paid off the mobile.
Thanks to some good friends we have a place to live and work although going from a 16' x 80' mobile with an inside heated to a 26' fifth wheel and an unheated shop - i.e. starting all over at our age has not been easy or conducive to our stress levels. Plus I've got $30K in med bills to pay off............
The point of this diatribe is not for commiseration, but that you're not alone and dealing with all of this increases stress a bunch and then the stress makes things worse and you wind up in a vicious circle...so yep do what you can to lower the stress - go fishing or shooting or whatever, pray, do what you can when you can in the shop and don't stress over what you can't do (nope not easy but necessary) and pray some more, and...but that's easier said than done.........wish I could do more than offer some advice and commiseration and prayers, but bottom line is there is always light at the end of the tunnel although it may not seem so right now...and as Betty Davis once said - getting old isn't for sissies!

PS - one good thing is I lost 50 pounds which I really needed to lose - not the easiest weight loss program..that along with a loving wife of 30 years and a few caring friends has been a ray of sunshine in the midst of the dark..........

and when things look the darkest I also remind myself to calm down with a couple of quotes
George Pattons' advice - "Do not take counsel of your fears"

and from the Dune book, "Fear is the mind killer........"

[Ed Caffrey]

I now know/understand what is/has been going on with me. Yesterday, and for the last month+, I was convinced that I was going to die. Sounds crazy right? Well, I suppose it is, but yesterday morning I spoke with both Jim Clow, and Steve Kelly on the phone....I was just as distraught, down, out, beaten, hurting, and whatever other words might apply, as a man could be.
Jim Clow made the 4 hour drive down from Canada, and Steve Kelly showed up (3 1/2 hour drive) unannounced about 2:30pm.....and after a few hours, they had on the way out of my hole! I know I'm not completely recovered, and I know I'm gona need some help/counseling, but now I recognize that all the stress of the last 4+ months has gotten to me. Whether I call it "stress" or "depression" isn't really important, but at least they made me understand/realize what has been happening to me.
Yesterday morning I could barely function.....and last night I went to dinner with Jim, Steve, and Steve's Daughter, and I ate more food than I have in the past week.....and was actually smiling and laughing! This morning I am in the shop, made the first pot of coffee that I've made in over a month, and am going to face whatever comes with a new perspective. I sit here astounded at the fact that "it happened to me", and that I never saw it coming, nor recognized it when it pounced on me.

In short, God has worked a miracle in me! Yesterday, two of my best friends took the time, and made the effort to literally save my life!
Never in a million years would I have thought that "stress" could ever effect/get to me. How could I not have seen it?!
I spent 20+ years in the military, saw people blown up and scattered across battlefields, and never once flinched, but all of this personal tragedy that has fallen on our family over the past few months had me to the point that I had given up. I was actually saying "goodbye" to my wife, worrying about how my family would survive, and never even realized/recognized it!

I won't get too long winded about it here, but suffice to say that I now understand a big part of what was/is going on with me, and I can't let it have me. I still hurt a bit from the lung biopsy, and still am apprehensive about what the results will show on Friday's Doc Appt., but at least now I have identified the "enemy".....and am willing/ready to take the steps necessary to defeat it!

[Doug Adams]

Glad to hear you sounding much better Ed. You can thank God for good friends. Still praying for good results on your test.
Doug Adams
John 3:16

[EdStreet]

There ya go, that is what I was hoping would happen. One very big pitfall in the male brain is shut things down in order to cope with other issues. The problem is those things that get shut down does not get addressed latter on and it?s like pushing a pebble off the side of a mountain, by the time it is a few feet down hill it has grown into a giant snow ball and turns into an avalanche. Meaning little problems add up to become HUGE problems if not dealt with and when they become BIG problems we are often unable to associate them with the little problems.

As much as I love the military (dad was career) I do have to point out that the military does encourage this behavior, especially in combat situations and there is no deprogramming or any type of adjustment before during or after, it?s just drop them in and expect things to work out for themselves. Things like PTSD is very heavy in situations like that and just the tip of the iceberg.

I can tell you from firsthand experience that once you are able to identify anxiety and realize how it affects you then you will be forever more able to approach situations with a deeper more meaningful approach, not just physical actions but conversations, thoughts, ideals and the like.

From reading the forum post it was very crystal clear what you were dealing with from early in, I have seen it way to many times and I wish I had known about it earlier (just found out this week, and it's Tuesday to boot). All that nervous energy has to go somewhere and more often than it should it comes out in the bad ways that you have experienced.

One more thing to remember to, the chemicals they pumped into you for the operation is some very nasty things. I have had many doctors tell me it will take about 1 year for your body to purge that junk and not to mention what affect it has on the brain and other areas like hormones and other chemical production facilities.

One thing that I would like to point out here is many times when the body deals with physical pain it releases hormones and other chemicals that induces anxiety (remember that snowball effect?) Think of the human brain as nothing more than a machine, a car engine if you will, by feeding it chemicals, like fuel, you will get certain results. Now the human brain does not just run on one type but HUNDREDS of things.

[Chuck Burrows]

"many times when the body deals with physical pain it releases hormones and other chemicals that induces anxiety...."

yep two biggies are adrenaline and endorphins - the street drug mixture of cocaine and heroin known as a speed ball is an analog of the bodies natural defenses, but it sure does funny things to ones mind. Add the meds you mentioned like oxycodone and you can wind up in real bad straights

[cdent]

Thanks Jim and Steve, very much.

Chuck B., only the best to you and your wife. Don't plug in the pot this morning Ed. Take that ABS journal that you probably haven't cracked open yet and see what the breakfast special is at the Double Barrel., maybe

Take care, Craig

[Walt2]

Glad to hear that things are looking up Ed! Will pray for the best results Friday.

[Ed Caffrey]

I'm coming back to who I am! Man that "clouded mind" thing is not only tough to wrap my head around, but I know it's someplace that I never want to go again. I can remember a time when I was the one saying that "stress", "anxiety" and/or "depression" were nothing more than "cop outs"......now I know better. That stuff sneaked up on me, and even when it was upon me, I never realized it!

I'm now back to eating again, my brain is clearing to the point where I want to work in the shop, and all things have a new perspective. WHEW! I'm still a bit apprehensive about going to the Oncologist in the morning for the lung biopsy results, but I know that no matter what the outcome, it's not going to be anything that God can't get me through!
What a past week! That was the lowest of lows that I have ever experienced.....but it has also brought the most growth as a Christian and a human, that I have known.
I can't thank all of my friends and family enough for keeping me in prayer. Special thanks are due to Jim Clow and Steve Kelly.....who literally saved my life!

God Bless you all!

[cdent]

Morning Ed, go get 'em.

[Ed Caffrey]

Well, went to the Oncologist this morning. Was pretty apprehensive...but made it to the door.

Long story short, they are still not completely sure what this in on/in my lungs. The biopsy came back as having a 2% count of cancer cells, but the Doc told us that is fairly standard for most humans. He went on to conclude that this is likely one of two things....
1. A "low grade" lymphoma, which is very treatable/curable with radiation treatments. He is sending the biopsy off to the Mayo Clinic to get another opinion.
2. Lung Abscesses/infections, caused by some foreign material that has gotten into my lungs.

Starting the first of July, I have to take two weeks of steroids, then on the 19th I go in for labs, another CAT scan, and a visit with him. He says that after taking the steroids, IF the spots DO NOT show up on the CAT scan, then it is the abscess/infection thing.....but if they do show up, it is likely the low grade lymphoma, which we would do radiation treatments for.

NOW, since I am feeling better, and starting to be more myself, it's time to get back to making knives and doing what I should be doing!

[Doug Lester]

I hate to be the little blue bird of happiness here, Ed, but if you haven't been on steroids here's a heads up. They can make you real irritable, just an FYI. It's worse for some than others. I had them interact with some chronic medications that I was already on and it was like a week long anxiety attack so make sure the doctor knows about everything that you're taking. The problem with steroids is that you can't just suddenly stop them once you start without having problems. You have to taper off them, as I'm sure you'll realize when you get the dose pack. Also stay away from the scales, you'll probably retain water like a champ. The water weight that you'll gain will go away after you taper off the steroids so it really doesn't count anyhow.

Keep the faith.

Doug

[Ed Caffrey]

Geez! If ain't one thing it's another! That trip through the oxycodone when I got out of the hospital wasn't pleasant at all! Those narcotic things and I just don't get along well.

Weight? I could probably use some of that right now. When this while affair started I was a "healthy" 239lbs. I got all the way down to 207lbs, and have started working my way back up....yesterday at the Doc's office I was up to 215lbs....which is about where I was when I came out of basic training 30+ years ago!

Moody? Me? That just means the wife can slap me around more than she does now!

[DwaneOliver]

So glad to hear your on the right track now Ed.
I am so looking forward to meeting you one day.... God Bless You