Home from the hospital

Just a quick status blog.... I'm home from the hospital, got home Thursday afternoon. The surgery went really well, everything accomplished as we had hoped. And more good news, they have found no signs of cancer in my lymph nodes, so at this point it looks like I'm not going to need chemotherapy. You have no idea how good that was to hear. The stay in the hospital was without surprises, which is what you want in a hospital stay. Lots of pain, lots of pain medicine, lots of time to sleep but not much comfort to do so.... a few cute nurses seeing me at my best, etc.

There's a big difference in the quality of care you receive in the Trauma ICU and in the normal in-patient stay area. In Trauma ICU, few patients and more nurses, so the nurses have time to actually talk to you to find out how to make you feel better. When they say "you can have another pain shot in 1 hour", they'll be back in an hour to give you that shot. In the other area, lots of patients and too few nurses. While they were all nice, it's obvious there aren't enough of them to go around. When that hour is up and you're looking for your next pain med shot, it's sometimes an hour or 2 more before you get it unless you're ringing that bell to keep them on their toes. That sucks. Still, all things considered, the hospital stay was ok, and the nurses did a good job of taking care of me.

Now that I'm home, it's all about the healing. Vicodin is my friend....everything just hurts. Slow movements and no heavy lifting. Played the Wii today which was pretty effective in getting my mind off the pain, so I anticipate that happening more in the days ahead.

The other big adjustment right now is learning to live with my ostomy. If everything goes as it should, I'll be back in the hospital in 6 weeks to have it undone, but for now, that's something new to learn how to deal with. So far it hasn't been too bad, although I also haven't had to deal with it anywhere other than the hospital and my home. I've had to replace the bag a couple times because of leakage problems, so rather than the bags lasting about 5 days each, they're lasting me about 2. I'm sure that'll straighten up as I meet with my ET nurse to work out the kinks in the weeks to come.

Oh, another oddity.... right after surgery, the thumb, index, and middle finger on each hand were tingly and numb like they had fallen asleep. I woke up from surgery like that. Some of the nurses thought it might be from the epidural, but the doctor said no. The anesthesiologist said it was likely the length of time I was laying on my back with my arms outstretched kinda stretched out the nerves going to those fingers. I have noticed before that if I lay flat on my back, sometimes my hands start to fall asleep, so this seemed like a likely cause. In the hospital, we tried using pillows to redistribute the pressure on my back and that made the numbness gradually decrease. As of right now, there still is a little bit of a tingly sensation in my thumbs on both hands, and sometimes when I stretch my arms the tingling sensation increases a little, but hopefully that'll go away soon. It's not painful or anything, just a little annoying.

I guess I'm now officially part of that ever growing group of people... cancer survivor.

Anyway, I've been sitting long enough. Time to find my friend Vicodin and go lay down.
-jk

I want to come back and fill in more of the details about my hospital stay. I had planned on doing it earlier but keep putting it off. So here's a quick entry to remind me to come back and fill it in... slacker!

UPDATES and STATUS

OK, this is my last blog entry for a while. I'm heading to the hospital in 4 hours, and 7:30 tomorrow morning is the surgery. I found out the surgery is not as long as I originally thought... only 4-6 hours. Then it's a couple days basking in the sun on a little island called "Surgical Intensive Care" and soon I'll be able to eat again... so hungry.

So, if you're looking for updates, read the comments to this blog posting. People will comment here as to how the surgery went and how recovery is progressing until I can post myself. If things don't go well and I owe you money.... you should have collected sooner. ;)

-jk

Where does the time go? Wednesday is sure fast approaching, and I have a lot of stuff to get done beforehand. I had an appointment with my ET nurse (and another nurse in training) on Wednesday and that went really well. Everything I had read said that nurses that specialize in this field of care are always really nice and helpful. She lived up to that expectation. While I was in the room waiting for her, I noticed a newspaper clipping on the wall about her that said she won a national award in nursing, so that helped to put my mind at ease a little. She explained the procedure from beginning to end and answered any questions I had. She also marked my stomach for where the stoma is going to be located for the next 6 weeks. Anyway, she's really nice and very helpful and I think she is going to make the next 8 weeks a bit more bearable.

She also told me that my doctor is excellent. She told me that he has been doing this a long time and he even lectures across the country in this field. She also said that nurses can't really tell you if they think a doctor is bad, so they'll always at least say "he's good", but the real way to tell is if they say "I'd let him operate on me"....and she said "If I was having this surgery, he is the one I would have perform it". That was really good to hear, after my last post about wondering about going to Ohio or someplace else. So if I'm going to do this, it seems like I'm in the right place and with the right people working on it.

Anyway, if I haven't said it already, here's the plan. Tuesday I'll be working from home as I start the "prep" to get my system ready. Anybody that has had a colonoscopy knows what I'm talking about, but I also have a couple more steps (and more pills) to the prep to make sure everything is clean and ready to go. Tuesday at midnight I go in to the hospital and they start hooking me up to everything, giving me IV's and whatever to make sure I'm well hydrated. Wednesday morning at 7:30 they take me in to surgery. From what I understand, it's about a 10 hour surgery. Afterward, I'll be in Surgical Intensive Care for a couple days while they make sure things get back on track, make sure what's left of my intestines starts functioning again, and the nurse said I won't remember much during this time. The nurse said during surgery they'll put an epidural in if I want to help with pain management. After a couple days, they'll move me to less isolated areas and there's a small possibility I'll be home by Xmas. Actually, it's during my time in surgical intensive care that I'll finally find out what they did. Has it spread beyond my colon? Could they do the j-pouch? Will I need chemotherapy? All questions I'd like answers to.

In other news, today some friends from work are throwing what is now being called Jimdependence Day. It was originally going to be called "Down With The Sickness" (after the song by Disturbed), but got renamed to Jimdependence Day somewhere along the line. It's just a little sort of "get well soon" party for me. Anybody that knows me knows I don't like it when people make a fuss over me and I definitely don't want some sort of pity-party. This is a really fun bunch of people though, so there's no chance of this turning depressing. Somebody is bringing Rock Band and I'm sure there'll be other games as well. We were originally talking about going go-kart racing too, but I'm guessing that got forgotten as the party got more involved. Anyway, should be a lot of fun.

-jk

No, I haven't forgotten about the blog and I haven't died yet. I just haven't had much to blog about lately, so things have been quiet. For the most part, I'm still feeling good, as far as the disease goes, not much to report. I did however miss working out on both Thursday and Saturday, which sucks. Thursday I was really tired, and with working a few extra hours, I just didn't have it in me. Friday morning I had a sore throat which was the start of being sick all damn weekend. A co-worker came to work like Wednesday I think coughing and sneezing up a storm. He said he felt fine, but if you're coughing and sneezing like crazy, doesn't that tell you something? It's not just about how you feel, it's about other symptoms as well. The fact that you're coughing and sneezing means you're not "fine". Anyway, is it a coincidence that 2 days after he came to work, I'm sick? So that was my weekend. I pounded the "Airborne", Vitamin C, and Nyquil and by this morning felt good enough to go to work, which is amazing.

I read someplace many years ago that people with UC on average get sick three times as much as normal. Our immune system is just so hammered that we tend to get sick really easy. I'm not sure three times is really accurate in my case, but I used to get sick a lot easier before I started really taking high doses of Vitamin C year round. Maybe a coincidence, but it seemed to help me some. Now I don't get sick as easily, but when I spend a decent amount of time near someone that is sick, it's a good chance I'll be sick soon after.

I hate being sick.

Anyway, the 19th is fast approaching.. too fast if you ask me. I'm reading the 2nd book still, and I still highly recommend it for anyone wanting to understand more about what UC is like. If you have family suffering with it, pick up a copy. It'll open your eyes I bet. In the book though, he was recommended by his doctor to go have his surgery in Ohio, because they have a really good facility there. It got me thinking.... I shouldn't be worrying about work and crap like that. I should be considering where I'm going to get the best medical care I can get. Could I go to Ohio for my surgery? Or there's a great facility in Texas, maybe I could go there? Stanford? What's worse is I've heard some horror stories about Enloe. Hmmm, doesn't seem fair that after being given a diagnosis like this, I don't have the luxury of searching out the best medical care I can find.

-jk

I finished the first book, "I'd like to buy a bowel please" and it was a pretty good book. I definitely recommend it for anybody that finds themselves in the position of having their intestines removed.

The next book on my list is "It Takes More Than Guts" by Phillip Van Hooser. It's the personal story of Phil's battle with ulcerative colitis. I'm just beginning it, but so far I'd highly recommend it for anybody that has a loved one that is dealing with IBD (Irritable Bowel Disease). He talks very frankly about what he was going through and how he felt throughout his ordeal. I can certainly relate.

I'm finding the whole thing right now a little odd. I feel pretty good for the most part, although I am quite a bit more tired than usual. I'm sure the tiredness is from the extra stress and the feeling that things are a bit out of my control right now. Other than that though, I'm not feeling too bad. I had a good workout over the weekend and hope to get to the gym tomorrow morning for another workout as well.

So here's what I find odd. Throughout the day, I bump into people I know and they always ask "hey Jim, how's it going?" Most of these people don't know my current situation, and saying "I have cancer" seems like the wrong way to answer that, so I usually say "things are going good". I mean really, I feel pretty good other this cloud of doom sort of feeling over my head, but that's what I find odd. I have cancer and I'm telling people things are good. I'm feeling good and people know I'm healthy enough to workout and sooner or later they might find out I have, or with any luck HAD, cancer. I almost hear people saying "You worked out today? Don't you have cancer? Shouldn't you be in the hospital?" "Uh, no, I'm going to exercise and then I need to hurry up and get to work." That just gets me thinking, how many other people walking around me know THEY have cancer and are telling me they are fine? Probably, hopefully, none of them, but maybe there are people I know that I don't normally talk to that are in the same position as me.

Anyway, I just thought that was odd. It's strange to think that as good as I feel right now, I might be dead in 2 years if I do nothing. Two years ago I felt fine and was about 2 months from suddenly needing to have my gall bladder removed. But let's say that never happened. If I had cancer back then and the gall bladder thing didn't come up, I'd be dead about now... or at least so far along that traditional medicine would have been pretty much useless. It's somewhat unnerving to think you can feel so good and have things really going wrong. I guess that's why they say to get tested early and often. It comes out of nowhere and you can have no symptoms the whole time when you have the best chance of beating it.

-jk

Take that 5:00AM! I did manage to get up and go work out this morning, although like I said I had to cut it a little short to get to work on time for a training. I've been finding it harder and harder to stay motivated. I just feel like I'm getting more and more tired. The workouts definitely make me feel better though, so I need to keep it up.

Working out must be working though. I went to take my rubik's cube apart so I could spray some lubricant in there so it would turn easier and I broke the damn thing. Snapped one of the corners.

I ordered 3 books a few days ago on living with an ostomy (2) and dealing with ulcerative colitis (1) and they arrived today. One of them is more on the humorous side and another is more on the "how to deal" or "what to expect" side. The third book is one man's story about living with IBD. The initial impression is that they all look very good, but I'll write more about each one specifically after I have read it. I decided to start with the humorous one just to liven things up a little. It's titled "I'd like to buy a bowel please" by Brenda Elsagher. I should put an Amazon link on this page so I can get a shiny penny should somebody out there buy a copy.

Actually I was thinking of making my family read the 3rd book. Some of them understand already what life is like for me to a certain degree, but they obviously don't REALLY understand. It's that whole "walk a mile in my shoes" thing.

-jk

I haven't had much to report lately. I haven't been feeling all that good, just too tired. I didn't even make it to the gym on Tuesday like I had hoped. Well, I probably would have gone a little later, but I had a training I had to get to at work so I couldn't afford to be late. Anyway, my plan is to go work out in the morning, bright and early. I still have the training going on, all this week actually, but if I can get my ass out of bed, I'll go lift heavy objects. The training is really screwing up my schedule though, cutting my workout short.

You people that can drink sodas or coffee to wake up in the mornings have no idea how easy you have it. Try getting up a 5:00am, without your coffee, after a crappy night's sleep.

My stomach has just been blah lately too. Probably just from the lack of sleep and stress, but that's not helping any.

Anyway, the important stuff. I was hoping to schedule the surgery for the 11th of December, but that date is unavailable. So now it's either the 4th or the 19th, or I have to wait until January. From everything I've read, the longer I wait, the more I risk the cancer metastatizing, and the poorer my prognosis becomes, so speed is of the essence. The 4th means I'll be feeling a bit better by Xmas, but less money saved up and it just feels rushed. The 19th means I'm likely still in the hospital on Xmas but an extra paycheck to help see me through the 8 weeks recovery time. Waiting until January feels kinda like playing russian roulette. Probably the 19th.

That's all I know for now. I gotta try and get some sleep so I can get to the gym tomorrow.

-jk

Testimonials

I mentioned a while back that I wanted to write a blog on my problem with testimonials and alternative medicine in general. As I see it here are some of the issues. When you hear about a testimonial, you're hearing about the 1 case that was successful. Maybe there are hundreds of testimonials, but those are probably a small sampling of the total number of uses. You rarely, if ever, hear about the cases where it doesn't work. You hear about the 1 guy that had good luck by eating carrots and having his eyesight restored. You don't hear about the thousands of people that do the exact same thing with no results. So and so drank some herbal remedy and his cancer went away. How many other people drank that same tea and died of cancer? I've listened to a LOT of testimonials over the years, and tried most of the products being touted. In general none of them have worked, at least not enough to be called effective. The question is, has there ever been a case where the person touting testimonials for a cure, after hearing it didn't work for me, included my "anti-testimonial" in a subsequent sales pitch?

Am I saying I only want to do things that are 100% proven effective? Nope, not at all. What I'm asking though is should I postpone something that has a good chance of saving my life in order to try something based on the hearsay of a few people? And uneducated people on top of it. The doctors were uneducated too, before they went to school, and yet people somehow think the doctors are less knowledgeable than these people that have no medical education whatsoever.

To further complicate things, people are not inherently all that bright.... just look at advertising. People don't understand things like proper testing methodologies and statistical analysis and the like. People just say "hey, I had this problem, ate that fruit, and now my problem is gone... must have been the fruit". Abracadabra, Testimonial. They don't always look at what other changes have been going on in their life lately. They don't look at the fact that they've changed their diet or lightened their work load or started taking some new medicine months before that took a little while to kick in... or maybe all 3 with a half dozen other possibilities. In their mind, they did A and saw result B, so A must cause B. If it were that easy, we'd have no use for the FDA. It is NOT that easy though. Changes and cause and effect need to be measured over time accounting for many more variables than the average person is ever going to consider.

You want a testimonial? How about Aspirin works great for getting rid of headaches. It works for the vast majority of people just fine, so it must be good. Never mind the fact that some people experience a few side effects and get no benefit from it. Never mind the fact that it is associated with a potentially fatal disease if taken by children. There's more than enough testimonials out there to say you should take it. I personally get much more benefit from Advil, so that testimonial is worthless to me.

You want another testimonial? How about if you have ulcerative colitis you should take a prescription drug called purinethol. It works very well for most people, suppressing symptoms with few side effects. Sounds like there are probably a lot of good testimonials for that, in fact I KNOW there are. I tried it too, and in my case, it caused pancreatitis and my weight plummeted to 139 lbs. Another testimonial that is worthless to me. Actually, worse than worthless since taking it was heading me toward really bad times. The difference here though, is the doctor DID include the "anti-testimonial". He told me about the risk.

How all this pertains to alternative medicine.... I do think maybe some alternative medicines might work in some situations. Maybe they would work in mine, maybe not. I'd much rather drink a pot of tea every day than have a doctor remove my intestines. Hell, I'd drink muddy water if I could keep my intestines. But will any of those alternatives save my life in the next couple months guaranteed? And are you willing to bet my life on it? If not, then I might as well have the surgery, and in that case, who needs the alternative? If I had plenty of time to test the waters and sample the selections and see which one showed itself to be effective... and if I had a billion dollars I'd be a billionaire.

-jk

Think of the top 5 or 6 things regarding food that will make you feel like crap. Like maybe pizza gives you heartburn. Or you're alergic to milk or chocolate. Whatever. What, don't have 5 or 6 things? You lucky bastard!

For me here's the top 6 list.

1. not eating on time, when I'm hungry
2. eating small "snack foods" like hor's dourves... because I take fiber supplements with every meal, but usually not when eating hor's dourves or snacks.
3. greasy food / fatty food / fried food
4. high sugar foods like desserts
5. alcohol
6. eating too much

In no particular order, those are the things that make me feel like total crap. They are the things that without fail make life more difficult. They all set me back longer than just the normal recovery time. Drinking alcohol for me isn't just about recovering from a hangover. Hunger pains aren't just about getting some food in me and I'm fine. In all cases, it's normally a full day or 2 before things start to recover.

With that in mind, Thanksgiving was good. I didn't make it to the gym that morning, just too much that needed to be done. For the first time, I deep fried a turkey and it came out pretty good. Well first, I was starving during the day (*1), so at some point I started eating some of the triscuits and cheeze that were out (*2). We baked one turkey and fried the other, and both came out really good... and we managed to NOT set the house on fire, so that's an added bonus. Had turkey (some of each) and mashed potatoes with gravy (*3), rolls and butter (*3), and topped it off (*6) with a nice piece of chocolate pie (*4). There was alchohol present but I was not drinking.

It was good, really good. By 8:00 last night, I started feeling like crap. I had some small hope that I'd make it to the gym to work out, but by morning it was obvious that was not going to happen. Still, after an unpleasant few hours this morning, I've been feeling better.

Still no decision on surgery. I've been thinking Tuesday is just too soon, but maybe the next availability, which I think is not the following Tuesday but the one after that, might work. I heard about a "chemotherapy flush" sort of thing today where they stick a hose down you and flush you with chemotherapy chemicals much like you might flush a radiator. I guess it's supposed to kill the cancer by flushing it directly rather than waiting for your blood stream to deliver it or whatever. Do they do that sort of thing? Would it work in my case? All very good questions.

-jk

I've been thinking, I should have sub-titled this blog "The shit I go through because of the shit that goes through me." Sorry, just struck me as funny.

So I haven't made any decisions yet on what to do, about life, literally. I know I'm going to have to really fight hard to avoid analysis paralysis.

Imagine this. You're in a small airplane at night flying over the United States when you suddenly have engine trouble. The plane is going down and you need to decide whether you put on your parachute and jump, or try to survive a crash landing. Statistically you might be better off surviving the aftermath and being found by staying with the plane and riding out the crash landing, but statistics are worthless to the individual. As my doctor explained, statistics only work in a population. A population may have a 60% chance of surviving, but for an individual, it's either 0% or 100%. You either do or you don't. The fact that some people survive plane crashes means nothing to the individual that dies. Each situation is different, as is each person. So, what to do. If you decide to jump, you may die because doing that at night is not easy, but realistically, your chances might be better. Right now you're high enough that you CAN jump with the best chance of survival. Or you could try to ride out the crash. If the terrain below is level and clear of obstructions (unlikely, but possible), that'd be easy. If there's trees and boulders and whatever else, that could be suicide. If you wait until you are lower to see the terrain, it'll be too late to jump, so you need to decide now, in the dark, with no time to consult Google. What do you do? Put on the parachute and jump, or buckle up and take your chances?

The parachute is the surgery. Riding out the crash is alternative medicine. If I'm going to jump, the sooner the better. If I wait, things will progress to a point where I won't be able to jump. Maybe you or someone you know rode out the crash and survived. Does that mean I will? Most people with ulcerative colitis have good results with one of the many different types of medication. Even though statistically those medicines should work great on me, in my actual case, they don't work and the last one started causing pancreatitis as well.

Analysis paralysis. I'm late for work.

-jk

Diagnosis - Part 2

I haven't blogged the last couple of days mainly because I didn't have much to report and no spare time. I felt ok, not great, not too bad.... just tired really. Always tired. I just don't have enough time to get it all done.

Today was another busy day, with stuff to report though. I got up at 5:00 AM and went to the gym. That was good, although I could have used another 30 minutes at least. As I've said, I feel better on days I work out. It's not just the general "feel better" feeling that you get from working out. It's also that my colitis seems better on days I work out. Maybe it's the stress relief, maybe it's my imagination, maybe it's something else entirely. I wish I had a schedule that let me work out every day without losing sleep or what little leisure time I have. Maybe I need to get a job as a personal trainer.

Anyway, in the afternoon today I had my doctor's appointment with the surgeon. My ex went with me (thanks!) and we got a chance to ask questions. Lots of people have been telling me I should be taking alternative medicine cures of one form or another. While those may work in some cases with varying levels of success, my doctor explained that if I want to do any of those things, I can, but that doesn't stop the fact that my colon needs to come out, now. He said my best chance for survival is if they remove the part that currently has cancer. Doing any less is running the extremely high risk that it'll spread (not if, but when), to an organ that will kill me. The liver is almost begging for it, but it's certainly not the only candidate.

Actually, what he said was a lot more complicated than that... what he said was he won't know the extent of what needs to be done until he's in there. He examined me for the potential to do what is called a J-pouch, and from what he knows right now, that is an option for me. But once I'm under the blade, he'll find out exactly what needs to be done. If the cancer is too far spread, they won't remove my entire colon because my life span will not likely be long enough where colon cancer would be much of a risk. In that case they'd just take part of the colon and re-attach the plumbing and good luck. That's less likely, but a possibility.

If the cancer hasn't spread beyond the colon, they need to take out the entire colon because part of the colon has cancer, and parts of the rest are turning cancerous in the very least. So in that case my choices are an ileostomy or a J-pouch, each with its own list of pros and cons. A J-pouch has some possibility of cancer and "pouch-itis", and has the added joy of 6 or 7 trips to the bathroom each day for most people and as much as double that or more for some. An ileostomy doesn't have any possibility of cancer or the trips to the bathroom, but you have a bag on the outside of your body. As with any major surgery, other complications are a possibility. Geez, can I have door 3 please?

As an aside, there's a commercial playing on TV quite a bit these days about "Living with Ulcerative Colitis"... it almost makes me laugh. The guy on the commercial says "I'm going 6 times a day". Damn dude, you don't know what rough is. Six times? Hell, that's a pretty good day for me.

If the cancer has spread to any lymph nodes, chemotherapy will likely be needed. We all have heard how much fun that can be.

So, he said things like alternative medicines are fine for helping in the healing, but they won't heal the cancer that is in there now. He explained how cancer cells start out like normal cells and through a series of gene mutations (7 or 8 in total) they progress through different stages of cancer. He said my best chance of survival is to first remove the cancer, then do what I can to help heal. Don't remove the colon, the cancer in there will spread and kill me. Remove only the part that has cancer now, and the rest will turn cancerous soon enough. Remove all of it, and I won't have any chance of colon cancer anymore. Or something like that. I wouldn't quote me on the specifics, I'm just repeating as best I remember it.

Anyway, he said I could do it when I was ready, but the longer I wait, the more chance that it'll have spread and my outcome will be worse. As early as next Tuesday, or as late as right after Xmas. My down time is going to be 8 weeks. EIGHT WEEKS. Damn, that sucks. I'll likely be able to collect some medical disability during some of that time, but as anybody that has ever had to go on temporary disability knows, they don't pay you what you would have made at work, they pay you a percentage of your pay. If you're basically living paycheck to paycheck, good luck paying your bills. What really sucks is I've worked SO hard to clean up my credit over the last few years and this is not likely going to help that any. So if you feel like making a donation to the "Jim's being disemboweled" fund, now would be an excellent time. :-)

-jk

First off, thank you so much for the words of encouragement and well wishes I received from everybody the other day when I sent out the email. I really appreciate it and it helped to convince me that spreading the word was worthwhile.

As for me today, I'm feeling pretty good. Didn't sleep that well, but got up this morning and went to the gym and had a good 2 hour workout. Felt pretty good, although I could use a nap now. I need to find enough time to do that more often.

It amazes me how inconsiderate some people are. While I was at the gym, these young guys, probaby in their early 20's, were waiting for the basketball court to be available. This one guy in particular was bouncing the ball repeatedly, making an effort to bounce it really hard. Sounds innocent enough, except he was doing this inside the weightlifting area. Every once in a while, the ball would get away from him and he'd just go get it and continue. More annoying though was that the noise he was making was starting to drown out the music playing. I actually turned up my headphones to drown out the noise of his basketball. It just amazes me that he had no concept of the fact that people were there to work out and the music was playing for a reason. It's much easier to work out to music you enjoy rather than some jackass bouncing a ball.

Anyway, my mom stopped by with some information she and my brother have found regarding alternative cancer treatments. My dad has some ideas about alternative remedies, as does one person that left me a comment and probably quite a few other people. I appreciate all the investigation people are doing on my behalf, truly I do, I just don't know what to do with it all. It'd be so much easier if I KNEW what would work. I don't have a lot of time here, so starting something that MIGHT give me results in 2 years just means I'll have a healed dead body. If I had 2 years, or 6 months for that matter, I doubt my doctor would want to operate in 6 weeks. It'd be nice if I had the time to sit around and read up on all these different treatments and spend time investigating each one, but by the time the work day is done, I find less energy to sit at my computer sifting through bogus remedies. I'm sure they're not ALL bogus, but just because there is a testimonial from somebody saying some treatment worked for them, that doesn't mean a damn thing in my opinion. Anyway, I think I need to start a separate blog about my opinions on alternative medicine and testimonials since that is where this whole thing is heading. I also want to add a list of "remedies" I have tried for my ulcerative colitis, so you can see that I'm not quick to discount alternatives. All coming soon.

-jk

I've been struggling a little bit with the idea of how vocal I want to be about my problems. I mean, I know this is a public blog and all that... I'm more talking about sending emails out to friends saying "I have cancer" or whatever. It just feels kinda like being an exhibitionist. I've known other people with serious medical issues on their plate and they never seemed too free with what is wrong with them. If it was something more like the plague or nuclear radiation sickness or maybe bitten by a radioactive spider or bombarded by cosmic rays that gave me super powers... but no, colon cancer. How un-fun is that? Anyway, I'm probably sending an email out today,which is why this is on my mind at this moment.

Otherwise, I'm feeling ok today. Didn't sleep very good, up a couple times during the night. I don't feel like I'm quite back to normal after the colonoscopy. Close maybe, but still a little bit blah and sort of unstable. The stress probably isn't helping that any... and neither is feeling like everything is up in the air. I need to meet with the surgeon to know what's going on there and need to meet with my doctor to know what the results of the cat scan are. I also need to start banking blood, according to my doctor. He said I should start banking my own blood to lessen the need of a transfusion when I have my surgery. It's too easy to just not think about all this crap and put it out of my mind, but that's only going to make my problems worse in the long run. Hell, not even in the long run.. in weeks from now.

The weekend is here though, so I'll get to the gym tomorrow and that should help. I'm pretty much back on track with going to the gym, so tomorrow should be a good workout.

-jk

The question has come up a few times now about why they can't just do a resection where they just cut out the piece with cancer and sew the rest back together. I think the problem has to do with the amount of damage and amount of cancer. If it was just a small tumor that hadn't penetrated the intestinal wall, maybe they could. In my case, it's not a surface mounted tumor but instead it's the cells of the intestinal lining that are turning cancerous, and the "good" tissue left is "ulcerative". So, even if they did remove just the cancer parts, and even if they were able to stitch the rest back together enough, what I'm left with not only has ulcerative colitis still, but has now shown a tendency toward cancer. I would guess that the likelyhood of getting cancer again, which is already very high in people with ulcerative colitis, would be too high to consider.

Really though, I won't know any of the "real" reasons until I meet with the surgeon, and I'm supposed to meet with him next Wednesday.

As for when this is all supposed to happen, right now the thinking is within the next 6 weeks... so Merry Xmas. Again, I'm sure the surgeon will have more specific ideas.

-jk

Feeling pretty good so far this morning. Got up at 5:00 AM and made it to the gym. Had to cut the workout a little short because I have a meeting this morning, but it was still pretty good. A bunch of treadmills in the back room are broken so I had to use one of the ones in the front.... it always seems like I can run farther, easier on the front treadmills. Not sure if it's because the incline isn't set right or what. Anyway, good workout.

When I told my friend about my medical problems last week, his comment was that it sucks that after finding out such dire news, I still have to go to work. He said "You shouldn't be working! You should be traveling to doctors, meeting with specialists, trying to get cured." Damn, how true that is! How much would it suck if you lost organs, or worse died, only to find out that a specialist nearby could have cured you with some new treatment? I'm sure it happens more often than I'd want to know.

Last night while talking to my brother, he commented on how he can sympathize and even imagine what I'm going through, but can't really put it in perspective enough to identify. He recently lost someone very close to him and until that happened, he couldn't really understand how much it hurts to lose somebody close. It's true I think. Until you've been dumped by somebody you love, you don't get it. Until you've had somebody close to you die, you don't get it. Until you've been diagnosed with a something that at the worst is going to end your life early, and at the best is likely to make it much more complicated and much less pleasant, you don't get it. Don't get me wrong, I'll adapt as I think most people do, and people often imagine things to be much more difficult than they turn out being. Hopefully there won't be much more I "need to get".

-jk

So far today, I'm not feeling too bad. I didn't make it to the gym this morning, which sucks. I got up on time, but figured I just didn't have enough time this morning to work out, so I'll try and get there tomorrow. I definitely feel better on days I work out, as long as I'm getting enough sleep.

This morning I'm going in for yet another test. They're doing a cat scan, because apparently we haven't found enough stuff wrong with me already. So, yeah, barium, it does a body good. I drank half last night and need to drink the rest in a half hour or so. Wish me luck... if it turns out bad, I'm going to blame you.

Otherwise, yeah, I'm feeling ok. Which is kinda funny. There's a lot going wrong right now, and for all intents and purposes, on the outside you might never know I wasn't completely healthy. If you know what to look for, you'd definitely see signs. Maybe some day I'll shock some of you with "a day in the life of".

-jk

Diagnosis

I've considered starting a real blog a few times in the past. I used to have a small, low traffic blog a while back that was just between me and a few online friends, but I'm talking about a real blog. A blog where I talk about my life, not just exchange jokes.

The reason I've considered it is this. I've had ulcerative colitis for close to 20 years now. Between the difficulties of the disease and difficulties of the medicines, I thought maybe writing about it might be theraputic for both me and for somebody else going through what I have gone through.

Well, because I lagged and didn't start the blog back when I should have, back when the worst I could say was "I've been living with ulcerative colitis for X years", I have to start it now when I wish THAT was all I had to say. No, now, I have been given a harder pill to swallow. So now, I'm going to cut to the end and tell you about my most recent news, and then I'll fill in earlier details later as I have time/energy.

So, it goes like this. It was back in 1988 I believe when I was diagnosed with ulcerative colitis. Life has at times been very hard, but survivable. As I said, I'll fill in some of the details later, like getting down to 139 pounds (and being over 6'), and "who designs building with only one bathroom?"

For now though, jump ahead to October 2007 when some blood tests for another problem showed "abnormal liver function". After more testing, it was determined that I have "Primary Sclerosing Cholangitis" which, as I was told "is not a good diagnosis to have". As I understand it, it's found often in people with ulcerative colitis, sharing the same cause, and has a diagnosis that commonly ends with "you'll likely need a liver transplant in 10 years or less and you have an increased chance of liver cancer."

My first thought was "Damn, that sucks!" Actually, the rest of that day (my doctor called me on a Sunday), and most of the next day, I think that was the G-rated version of what I thought. By Tuesday though, I was trying to change my focus. I started really trying to focus my thoughts on "A lot can happen in 10 years. They can already do transplants, so who knows what kinds of stuff they'll be able to do in 10 years... that's a long time." Of course I remember thinking that when I got ulcerative colitis and I'm still struggling with it 20 years later, but I'm trying to remain optimistic.

OK, I pretty much had moved on from that diagnosis when I went to have a colonoscopy in the beginning of November 2007. The results are in, and they aren't good. Multiple biopsies were taken and it shows an adenocarcinoma (cancer) and "at least high grade dysplasia", or early cancer. Actually, the pathology included things like "moderate chronic active colitis with extensive ulceration" as well which would normally make you freak out if it weren't preceded by cancer.

So what happens now? Well, according to the doctor, and the couple of doctors that he had review his findings and sign off on it, I need to have my large intestines removed. Soon! It was supposedly a good thing we caught it when we did, which is why it's so important for people, especially those with ulcerative colitis, to have colonoscopies. Blah blah blah! To be honest, while logically I know I should be grateful we caught it early, I really don't feel very grateful. I feel like kicking the doctor in the fucking balls. No, not really, but dammit, what the hell? Remind me later to tell you how fucking unfair this whole thing is.

So yeah, they're going to take it out unless I pull a rabbit out of my ass....well probably then too. How is this going to affect my life? I'm not sure, but it can't be too good. After they take it out, is that the end? No! I may need chemotherapy or radiation too, but we won't know that verdict until surgery. It is the end of the possibility of colon cancer. It is NOT the end of my liver problems however. Removing the colon removes the result of my ulcerative colitis, but it does not remove the cause which is likely causing my primary sclerosing cholangitis too. I need to meet with the surgeon that will do the cutting, probably some time next week, so I'll know more about how this will play out after that.

That's all for now, I need to use the bathroom.
-jk