I'm starting to feel like King Candy/Turbo at the end of Wreck-It's-Ralph

I keep getting drawn in closer and closer to an inevitable outcome no matter how much I want to avoid it. Like bugs in a bug zapper.

I made it exactly one week on my soft solids diet.... We went back in on the 15th for the same problems. I couldn't keep anything down. We actually knew we would be back in the hospital sooner than that. On Friday we went into Lemmen Holton Cancer Pavilion and I got a bunch of fluids. I was trying to hold out until Monday because I already had an appointment up there, and they would have been able to admit me without going through ER. I couldn't make it! We went in on Sunday afternoon.

I got another tube down the nose. That was an adventure all its own. They had to put it in not once, but twice! The tube was twisted up a little too tight, and it didn't want go all the way down. Second time's a charm. My goodness, that is a painful experience! Especially when you do it twice back to back... So now where admitted to floor 7 instead of 5 (surgical instead of oncology) so I knew they had something in mind right of the bat. I had a bunch more scans (Big surprise, right?) I lost count quite some time back but we're talking about at least 20 CT scans in the past two years. Again, I was NPO (nothing by mouth, just the sponge to wet down my lips and gums. This time it took it seriously (for now).

Eventually Dr Chung came in and said what he had said a week earlier, it blocked up at the same spot, and that couldn't fix it. It was either going to have to open up on its own again or I was going home with hospice. I told him I just wanted to get through the holidays. And that I couldn't let Christmas, in my kids minds, to be associated with their dad dying.

Hospitals are huge entities. Sometimes left hand doesn't know the the right hand is doing... Angela and I were sitting in my room while a nurse was entering my vitals into the computer when someone from transport showed up. Angela asked if they were sure they had the right room. They did. We were hesitant to go because nobody had said anything about having a procedure (7th floor, remember?). Thankfully the nurse was still in the room, and she was able to look it up. They were taking me down to radiology. They wheeled me down and put me in a waiting room. It was over a half an hour before someone came and explained why I was there. It seems that they could see some fluid on my right lung. It just needed to be drawn off by putting a large needle between two ribs into this pocket of fluid, and just let it siphon off. Eventually they wheeled me down to the interventional radiology room (so they could guide the needle) and we got the ball rolling. They were able to use ultrasound (yay, for less exposure) and that they though it was about 400ml of fluid.

Because of all my ileostomy measuring I've done, I know what 400ml looks like. Thought that that was an awfully large number. I was wrong. 1550ml is an awfully large number! That's how much fluid that drew from the sac that my right lung sits in. 1 and a 1/2 liters. Almost a half gallon! My right lung was being scrunched up so much, no one could believe that I didn't notice this. Having a high tolerance for pain can be a really bad thing... That's what got me into this mess in the first place. While all this was going on, Dr Chung was working on a plan, too.

He suggested I get a stomach drain put in. He said that's what he would recommend fro his brother if he was in the same boat as I was in. The nicest part of getting the drain, is that I wouldn't have to have a tube down my nose anymore. I agreed to it and the procedure was pretty straightforward. They put you just slightly "under" during this procedure, and I really do not remember any of it, but when I came to I didn't have a tube in my nose any more.

The other big difference between this trip in and the one a week earlier is that they set me up with TPN (feeding through the blood stream). This gave me a great deal more energy and made it a lot easier to cope with shape of things. Like I said at the beginning, I'm like a moth being drawn into the zapper. Truth be told, things are pretty bleak at the moment. I'm getting fed from a big bag with a pump putting "food" into my jugular. That's what's keeping me alive.

I'm home now. I came home on Saturday the 21st. Everything else is the same still doing the feeding bag, but only for 12 hours at a time, so I can put it on at 8pm and take it off at 8am. Then I'm free the rest of the day. The stomach drain allows me to drink "thin liquids" whatever those are. The ability to drink is psychological only, I do not get at nutrition or hydration through it. Just the satisfaction of being able to drink something is nice. I'm the first 24 hours I was home, I think I drank 8 water bottles.

Hopefully the rest of the holiday season will pass by uneventfully.

That was too close!

I was just released from the hospital yesterday (11/8). I went into the emergency room on Wednesday because I wasn't able to keep anything down again. They found a blockage in my small intestine so no food and nearly no liquid was making it into my system. I was severely dehydrated and pretty malnourished. All that weight I had talked about gaining in the previous post was long gone. I was down to 170 lbs. They had to put a tube down my nose into my stomach to drain it off. This is done for two reasons: one is to take the pressure of my stomach so I wouldn't throw up again, the other is to prep for possible surgery.

After multiple X-rays and a CT or two, they really couldn't figure out why there was no throughput. They decided, after looking through all of the radiology results that there really wasn't anything (from a surgical standpoint) that they could do. They were talking about sending me home with Hospice at that point! In the meantime, I was just on a saline bag for hydration, and I was allowed to eat ice chips to keep my mouth moist. Keep in mind, I have a tube down my nose sucking any liquid in my stomach right back out. After the second or third day I decided that crunching ice wasn't enough, and despite the rules I drank two huge glasses of ice water.

You've never tasted something so delicious!

Of course, it was no secret that I did this because the stomach drain was very suddenly, very full. I tried to logic my way out of it by pointing out that the suction was doing what it was supposed to do. I didn't get in trouble... When you are that ill, you get a lot of leeway!

That night, somehow, the blockage passed and my ileostomy bag was full of liquid! I was able to get put on clear liquids. After another day, all liquids. Then, soft foods. I had scrambled eggs and toast my last day there. They sent me home on a special diet of only soft solids. Meaning PB&J, tuna sandwiches, stuff you can eat without any teeth, for the most part. Now the battle to put weight back on has begun.

I'm posting this several weeks after the actual events, and I will be posting another entry almost immediately.

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

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

A lot to catch up on.

I've wanted to write this post several times, but wasn't able to put a positive spin on it... I've had several more tests since my last update. But I blew this off like it was summer vacation or something. So let me sum up the past few months.

I had my three month PET scan back at the end of June. The results were sorta mixed. There was good news in that the inoperable spot in my liver didn't show up at all on the scan. However, I had two small spots on the surface of my liver. My doc was optimistic right off the bat because of their location and how they looked. He thought that it was most likely scar tissue from the adhesion between my liver and diaphragm. But, we should do blood work as well. They drew blood in the office that very day, and I heard back on July 3 that my CEA marker had ticked up just a little bit. From 3.something to 5.something). Anything above 5 is considered elevated. Keep in mind, though, my CEA was over 900 on my first test back in January 2014.


Ok, so all that being said, this was where we were. The uptake alone was not too concerning, the CEA alone was not too concerning. The two combined? Concerning. Time for another test!

My first oncology related MRI! Only my second MRI period. I was actually kind of happy to get an MRI instead of a PET or CT, there's no radiation involved. I feel like I should start flinging webs, or become invisible or something pretty soon from all the radiation I've received. It took a couple of weeks before I could get in... The MRI was pretty uneventful itself. It just takes a long time. I was in that tube for 45 minutes. Much longer that a CT!

Now we play the waiting game again. It was July 27 when I received a call from my nurse/navigator. She asked if I had heard from the oncologist's office yet. When I said no, she said I better call in. I didn't like the sounds of that and said this sound like bad news. She said I couldn't  tell you either way, and you don't that sort of information from me anyway, do you!  I was driving to Alpena while this was happening, and there is a lot of dead area out in the middle of all that forest. I called and asked for my results, they said they would call back. Then, I drove into the middle of nowhere and wouldn't know if they called back or not.

When I finally got a call back, it was from a nurse who was reading the PAs notes who had read the radiologists notes. She said the the good news was that between the PET and MRI, the spots had not changed in size, but the were some things that were "concerning", and that I needed to schedule an appointment with the oncologist ASAP.

That catches you up to last Monday. I went into that visit expecting bad news. (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)

When I finally got to talk to the doc, he was pretty funny, and not at all what I was expecting. He said that he still believed it was scar tissue and that there was no "enhancement" on the MRI. (That's roughly the equivalent of uptake on a PET scan and has to do with the contrast dye.) His opinion was that even in the worst case, if it were something bad, it is growing so slow that we would still catch it plenty early on the next scan. That next scan will be in about two months and it will be another MRI. If it is something bad, it's a fairly simple procedure to remove them from the surface.

Let's pray that's not necessary.

This story has more reboots than the Star Trek franchise...

12 chemo treatments
Major surgery
8 chemo treatments
Major surgery
...

4/22/15 - I thought I was done after that. Not so much... I'm actually sitting in the waiting room for radiation oncology right now waiting for my simulation. They do a simulation to map out your anatomy before your first treatment. It's funny that I used to get anxious about all the CT scans I was getting. I've had about a dozen now... But that's nothing compared to the dose of radiation I'm going to get from each of these treatment  that's coming. Five days a week for four weeks, I'll be getting blasted by a linear accelerator. Each exposure from that will be greater than all of those CTs combined!

Radiation therapy is for that spot low on my left side that was found to be cancerous in its biopsy. I've been told that the side effects should be minimal. Maybe nothing... Either way, it's supposed to be the last step in the journey for a while.

4/30/15 -  I've had two treatments now. They go really quick. I met with my oncologist yesterday, and he confirmed that everything looks really good. He says current treatment not withstanding, I'm done! We transition to the 3 month checkup phase. That means REMISSION. Yesterday was a pretty good day...

I met with the radiation oncology doc today, and we talked about my visit yesterday. He feels the same way... Waaaay back in the beginning of all this, I mentioned what Dr. Campbell said about having a 30 or 40 year lifespan regardless of what we do to the cancer. My doc today said almost the exact same thing without me prompting him, or even mentioning what Dr. Campbell said. I like it when they're on the same page.

He also said I'll probably only need 16 treatments instead of 20! I still get the same amount of exposure, but larger doses in fewer visits. I would just as soon get this over with. By the way, I get 220 centigrays of exposure to that specific spot on my hip per visit. If you're curious what that means, I'm going to make you look it up yourself! It's your homework assignment...

Catching up after 2nd surgery.

Well that last post was a bit cryptic. That's the process of strong pain meds and other drugs while sitting around in the hospital with an hour to kill. Yes, an hour...

Anyway, it's time to catch up. Surgery was mostly successful, the colon recection went well, however, they did not perform liver procedure. They decided it was just too risky to mess with for what they thought was dead tissue anyway. Here's the rub, when they did the biopsy on my colon and that little spot on my pelvis, both were still hot. Regardless, we're playing the waiting game with that one.

As far as that spot on my pelvis, it's assumed to have spread there during the first surgery back in September. Possibly a drop of contaminated blood, or something similar. Either way, they removed it, and I go in to talk about some radiation therapy in a little over a week from now. It's mostly a "let's be sure we got it all" thing than anything else.

Bottom line, I'm not as done as I would like to be. It was pretty disappointing to hear that the cancer was still active. A couple of docs have considered more chemo, until I reminded them that I've already had 20 rounds!

I'm recovering pretty well from the operation, the incision is already completely closed (the first surgery took over a month to close up), but I'm still dealing with the side effects from losing a large portion of your colon. You can use your own imagination to figure that out.... I also have quite a fatigue issue to deal with. I get tired of I'm on my feet for more than 2 hours or so. I'll push through it and get my stamina back eventually.