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