Thursday, October 29, 2015
Enough with the doom and gloom
My last post was pretty down. To be frank, I do not have a whole bunch of good news to report. I had blood work last week, and went in yesterday to get the results. So far they are inconclusive. We just need to observe my CEA and CA19-9 for another moth to see if they start to recede. So if you do the math, that means I'll find out just before Thanksgiving. Its not all bad however. If you read all of my last post, you will notice that weight loss was a huge issue. I left the hospital at around 210, and was down to 170 at my lowest (in about a month). I am happy to report that I am back up to 190! I still need to gain another 10 or 15 in my opinion.
I'm also dealing with a ton of pain. It's to the point where I'm going to have to talk with the surgeon again. I'm praying that I do not need another operation. We're not talking about removing a tumor, more like cleaning up scar tissue... But I'm stuck in a bit of a dilemma. It's either more drugs, more scans, or more scars. I would prefer to none of the above!
Anyway, short and sweet on this update. I guess expect something around thanksgiving.
Adiós
Thursday, October 1, 2015
Two months of action....
And none of it good...
Right after the last post I put up, I started to have trouble. It actually started before then here's a quote from my last post "(Oh, by the way, I picked up a stomach bug over that weekend, and ended up in the emergency room and had ANOTHER CT scan)". It started out as some really bad cramps. I thought I had a twisted bowel, or something. (Nope) It wasn't a stomach virus either. It kinda went away for a few days, then it would come back. It got to the point where I actually vomited a couple of times. I went to my family doc, and they ran a bunch of tests. Couldn't be cancer, right? I just was told I was ok, AND had another ct to prove it... Anyway, they found in one of the tests that I had a Campylobacter infection. I was given an antibiotic and sent on my way.
It didn't work.
At this point it's been about 2 weeks since these gut aches started. It was starting to effect my work at this point. I couldn't eat much, or I would be in tons of pain. Some foods seemed more agreeable that others, but obviously something was very wrong. Towards the end of August, I finally went back to the ER. I made a great impression by throwing up in the garbage can right at the entrance door for the whole world to see! Needless to say, I got right in...
After explaining the entire ordeal to the ER docs, guess what? Time for another CT scan!!!! At least this time they saw something. They could see an intestinal blockage right where the large and small intestines come together. As you may recall, that is the exact point of major surgery back in March. Have you ever had a tube shoved up your nose, and down your throat? It keeps your stomach empty, so you don't accidentally asperate during surgery. Ever been awake when they installed one? I don't think I've ever wanted to hit someone so hard... They decided right after finishing that chore that it was time to head Grand Rapids. (Yay, my 1st ambulance ride!) I was taken through the ER entrance, but was only there for a couple of minutes before I was hauled up to the 5th floor. That happens to be oncology floor, by the way...
Time to meet some old friends:
I was told that night that they had a couple of tricks to try, but otherwise we would be waiting for my oncology surgeon to come it. They filled (through the the tube in my nose) my stomach with some type of contrast material. The idea is that it works it was down into the blockage like liquid Drano. That didn't do much either, so they ended up sucking it back out... I had more CT's and some good old fashioned X-rays. Bottom line, the blockage was very obviously there, but know one knew why it was there.
Next day: Got to see the doc! He wasn't sure what the deal was, but after mucking about with a bunch of tests, and getting nowhere, he decided it was time to open me up and get a first hand look (Oh goody)! They had pulled the stomach tube by this time, but I was going to get a new one for surgery. Of course, surgery is a no recall event, I still marvel at how it works. They wheel you into the O.R. and everybody is joking and lively, telling jokes etc. Including me.... But all of a sudden you wake up in recovery and never know what happened!
I woke up an undetermined time later, and found that I had some kind bag attached to my stomach about navel high, and just to the right. I asked Angela what was going on, and she said the doc would explain. (Never a good sign). Turns out the blockage was very involved, and could not be bypassed. The only option available was an ileostomy procedure (warning!!! Don't click if get queasy easily. It's nasty business...) Short version: My large intestine is no longer a part of the equation. I have a removable bag at roughly belt level that deals with the obvious issues that must be dealt with. I didn't actually freak out at first. I assumed it was temporary. I was wrong. There is a slight chance that it could be reversed, but I very much doubt it. This was a huge blow mentally. I'm already living without several parts you're born with! Now I not only lost a part, I gained a really ugly and disgusting prosthetic!
So what's the deal? Doc says even though it didn't show on ANY scan, when he opened me up, his trained eyes could see that it was the cancer constricting my intestines. He also said if the cancer has spread out of the abdominal cavity, I was in very very serious trouble. I'll save the suspense to say nothing shows up on any scans in my chest or anywhere else. In fact, on my post op scans, nothing shows up. Go figure. Did I mention that he didn't remove any tissue, only performed the ileostomy procedure.
So now I have stealth cancer... What the heck are you supposed to do about that?!?!?
I spent a week in the hospital, and now several more at home. (Have I mentioned how amazing BC Technical is? My coworkers have donated to HUGE amount of vacation time to me. God bless them all!) I left the hospital at about 210lbs. So down 10 or so in a week. Not surprising when you're in the hospital and eating from a bolus bag. Here's the scary part; in the month that I've been home, I've lost another 35 pounds!!! I'm down to 175. We're talking Jr high weight levels here! I can't keep it up no matter what.... There's a few reasons for that, and I'll try to list them all out. First, the incision from this surgery is in the exact same place as the March one. So the scar tissue is very inflexible. It's almost like having a lapband operation. Second, the ileostomy allows food to pass thru much quicker than ordinary, so nutritional absorption is reduced. Third, I simply have no appetite. I don't know why, but food doesn't really appeal to me much. I have to eat like I'm taking medicine. It's just something you have to do... Fourth, I've been diagnosed as Clinically depressed. Not real surprising when you think about it... We're working on some meds to make things better on that front. I didn't realize until today, but it turns out there's a fifth reason possible. The oncologist says it's very likely that the tumor is a big fat pig, and is sucking up all my food! (My words, not his).
So what's next? More chemo. I started on a new pill form of chemo today. As far as I know, it's pill only, no infusions. For the people that it works for, it works great, otherwise, we move on to something else. Oh, one last thing, seeing how this stealth cancer and the scan don't show jack, we're working off of blood work for status. My CA19-9 is up around 150. A few months ago it was in the 20's. When this started, it was in the thousands...
So now I'm caught up, I think. To sum up: cancer back, depressed, weight loss, chemo.
See ya in the funny papers,
Mike
Right after the last post I put up, I started to have trouble. It actually started before then here's a quote from my last post "(Oh, by the way, I picked up a stomach bug over that weekend, and ended up in the emergency room and had ANOTHER CT scan)". It started out as some really bad cramps. I thought I had a twisted bowel, or something. (Nope) It wasn't a stomach virus either. It kinda went away for a few days, then it would come back. It got to the point where I actually vomited a couple of times. I went to my family doc, and they ran a bunch of tests. Couldn't be cancer, right? I just was told I was ok, AND had another ct to prove it... Anyway, they found in one of the tests that I had a Campylobacter infection. I was given an antibiotic and sent on my way.
It didn't work.
At this point it's been about 2 weeks since these gut aches started. It was starting to effect my work at this point. I couldn't eat much, or I would be in tons of pain. Some foods seemed more agreeable that others, but obviously something was very wrong. Towards the end of August, I finally went back to the ER. I made a great impression by throwing up in the garbage can right at the entrance door for the whole world to see! Needless to say, I got right in...
After explaining the entire ordeal to the ER docs, guess what? Time for another CT scan!!!! At least this time they saw something. They could see an intestinal blockage right where the large and small intestines come together. As you may recall, that is the exact point of major surgery back in March. Have you ever had a tube shoved up your nose, and down your throat? It keeps your stomach empty, so you don't accidentally asperate during surgery. Ever been awake when they installed one? I don't think I've ever wanted to hit someone so hard... They decided right after finishing that chore that it was time to head Grand Rapids. (Yay, my 1st ambulance ride!) I was taken through the ER entrance, but was only there for a couple of minutes before I was hauled up to the 5th floor. That happens to be oncology floor, by the way...
Time to meet some old friends:
I was told that night that they had a couple of tricks to try, but otherwise we would be waiting for my oncology surgeon to come it. They filled (through the the tube in my nose) my stomach with some type of contrast material. The idea is that it works it was down into the blockage like liquid Drano. That didn't do much either, so they ended up sucking it back out... I had more CT's and some good old fashioned X-rays. Bottom line, the blockage was very obviously there, but know one knew why it was there.
Next day: Got to see the doc! He wasn't sure what the deal was, but after mucking about with a bunch of tests, and getting nowhere, he decided it was time to open me up and get a first hand look (Oh goody)! They had pulled the stomach tube by this time, but I was going to get a new one for surgery. Of course, surgery is a no recall event, I still marvel at how it works. They wheel you into the O.R. and everybody is joking and lively, telling jokes etc. Including me.... But all of a sudden you wake up in recovery and never know what happened!
I woke up an undetermined time later, and found that I had some kind bag attached to my stomach about navel high, and just to the right. I asked Angela what was going on, and she said the doc would explain. (Never a good sign). Turns out the blockage was very involved, and could not be bypassed. The only option available was an ileostomy procedure (warning!!! Don't click if get queasy easily. It's nasty business...) Short version: My large intestine is no longer a part of the equation. I have a removable bag at roughly belt level that deals with the obvious issues that must be dealt with. I didn't actually freak out at first. I assumed it was temporary. I was wrong. There is a slight chance that it could be reversed, but I very much doubt it. This was a huge blow mentally. I'm already living without several parts you're born with! Now I not only lost a part, I gained a really ugly and disgusting prosthetic!
So what's the deal? Doc says even though it didn't show on ANY scan, when he opened me up, his trained eyes could see that it was the cancer constricting my intestines. He also said if the cancer has spread out of the abdominal cavity, I was in very very serious trouble. I'll save the suspense to say nothing shows up on any scans in my chest or anywhere else. In fact, on my post op scans, nothing shows up. Go figure. Did I mention that he didn't remove any tissue, only performed the ileostomy procedure.
So now I have stealth cancer... What the heck are you supposed to do about that?!?!?
I spent a week in the hospital, and now several more at home. (Have I mentioned how amazing BC Technical is? My coworkers have donated to HUGE amount of vacation time to me. God bless them all!) I left the hospital at about 210lbs. So down 10 or so in a week. Not surprising when you're in the hospital and eating from a bolus bag. Here's the scary part; in the month that I've been home, I've lost another 35 pounds!!! I'm down to 175. We're talking Jr high weight levels here! I can't keep it up no matter what.... There's a few reasons for that, and I'll try to list them all out. First, the incision from this surgery is in the exact same place as the March one. So the scar tissue is very inflexible. It's almost like having a lapband operation. Second, the ileostomy allows food to pass thru much quicker than ordinary, so nutritional absorption is reduced. Third, I simply have no appetite. I don't know why, but food doesn't really appeal to me much. I have to eat like I'm taking medicine. It's just something you have to do... Fourth, I've been diagnosed as Clinically depressed. Not real surprising when you think about it... We're working on some meds to make things better on that front. I didn't realize until today, but it turns out there's a fifth reason possible. The oncologist says it's very likely that the tumor is a big fat pig, and is sucking up all my food! (My words, not his).
So what's next? More chemo. I started on a new pill form of chemo today. As far as I know, it's pill only, no infusions. For the people that it works for, it works great, otherwise, we move on to something else. Oh, one last thing, seeing how this stealth cancer and the scan don't show jack, we're working off of blood work for status. My CA19-9 is up around 150. A few months ago it was in the 20's. When this started, it was in the thousands...
So now I'm caught up, I think. To sum up: cancer back, depressed, weight loss, chemo.
See ya in the funny papers,
Mike
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