5 days, and really nothing new to report

A few people have mentioned to us, they have been checking for updates, and there aren't any. I guess this is kind of a case of "no news is good news" kind of situation.

Overall, it;s kind of a holding pattern. Ken is still exhausted, nauseated... and losing a bit of weight here and there. No, he isn't wasting away, but right now is a time for maintenance. One thing no one ever thought to mention was... it's not that he can't or even won't eat... He just isn't awake long enough to eat what he should. He is drinking ensure when he can with meals, etc. But I swear, I may start sneaking up on him with a bottle or two while he sleeps, and put it down the tube. (Believe it or not, that has actually been highly encouraged.)

Ken's mom and dad and Uncle Larry have stopped over from Northern KY for a short visit. It's nice to see family... and they bring goodies when they visit! Jan & Chip bring us items from "home" that we just can't get here. Last time, it was goetta and soda. Vernor's ginger ale for me, and Barq's red cream soda for Ken. They brought general groceries then too... greatly appreciated. This time was more soda... Busken's coffee cake (Ken: you NEED to eat some!!!!)... and tomatoes from my dad's garden!!

I guess that's really it for now.

And we begin week #3...

For those of you expecting to log in and read about some exciting and/or inspirational adventure we had from the weekend, sorry to disappoint, but there wasn't any of that this past weekend. There was, however, alot of sleeping and trying to feel well enough to putter around the house. That was the extent of my weekend. Wow. Exciting, I know. Not everyone can lead that kind of lifestyle. I am a trained professional, so please don't try to have this kind of weekend without proper supervision.

It's absolutely amazing as to how fast these side effects have hit. It's also amazing as to how hard they hit as well. I can wake up and feel somewhat "normal", but just the act of getting ready in the morning will just zap all my energy and I'm left with nothing but the feeling of just wanting to crawl into bed for the rest of the day. Add to that the nausea and the other side effects that are starting to creep up and it was just a great weekend. (Insert sarcasm here for that last comment...)

But, we are on the "midway" week. Once I get through this week I'll be about half way through with the chemo & radiation. YAY! The fight is halfway done. I would love to think that the second half of this is going to be easier than the first half, but I know better. But, then again, if it were easy everyone would do it right? ;-) (ha ha ha) It's all good, though. I just keep marking the days off and keep the end in sight. The projected end date (according to my calculations) is some time around Sept 30th, so that is the date I am shooting for. Once I get there I should be golden. (and able to glow in the dark for the next month. At least the kids won't need a night light, hahahahahahahaha)

That's about it for now. I'll post any updates as I get them or if I come up with something really cool or creative to write about. Stay tuned...

... Same Bat time, same Bat Channel.

Wanna know how to make Katie cry?

Subtitled: Some friends are simply amazing...

I received this picture as a text message today. While it may seem innocuous to the untrained eye... I gasped, and yelled for Ken to "Come see this!!!"

I have known for several weeks that a friend of mine was riding in a charity bike ride this weekend (100 miles, if you care about that kind of stuff), and I am pretty sure I was aware that it was for cancer research. But it never crossed my mind, that it might cross his mind, to say he was riding for some one he knows, affected by the dreaded C-word.

Maybe you need to know Mike... but I cannot adequately describe how and why this affected me the way it did. All I can say is, this is one more example of the fact that while we are 550 miles away from our blood family, we have friends who are family to us as well. Thanks, Mike, for reminding me of that, and godspeed to you on your ride tomorrow. (Well, it is actually today, rolling off in about 5 hours!)

Exhausted doesn't even begin to cover it...

Not much to write about. I had the 2nd round of chemo Tuesday and it went pretty well. Now, though, the dreaded side effects are starting. The exhaustion is unbelievable. I've been tired before, but this goes beyond that. It's a tired that goes to the bone. Imagine how you feel after a really hard workout. Now, multiply that by about one thousand and that is how I feel. Seems like sleeping is all I'm doing now. Ugh.

The nausea is a constant, but at least I have meds that help with that so it is tolerable. Never thought I could be hungry AND nauseous at the same time, but hey, I've even eaten when I'm nauseous. Guess you learn something new everyday, huh.

I've been told that most side effects don't come until later in treatment. I also know that when it comes to most side effects I react the opposite of what they are, so hopefully I'm just getting them out of the way now so I can finish strong.

On the plus side, Friday will be the end of the second week of treatment. YAY!!! Everyday down gets us closer to our goal.

Time to keep on keepin' on...

1 coin + 1 pair of gloves = ...

Well, what they actually equal to me is more than I can articulate. (Yes, I have been left speechless. Shocking, I know. Most of you thought that would never happen.)

Ok, upfront honesty here before we get going. The support we have gotten from everybody has been absolutely incredible. The reason I haven't said anything about it before now is simply because I didn't want to single out any one thing someone has done for us because invariably there will be something that someone does that I will forget about and wind up accidently hurting that persons feelings. Many people have done many wonderful things for us, most of them are things that we never would have expected, and we have thanked them in one way or another, just not publicly. What I got in the mail today from my brother, Steve, and my nephew, Nick, though just has to be shared with everybody. Once you read, you'll understand why.

Here's the story:

When I started my radiation, I found out that one of the things I have to do is keep a board in place under my feet. This is done so I don't move. Well, the way you keep this board in place is to hold it there by a rope. The rope has handles on its ends that resemble the handle of a shovel. After a while, they get slippery and it just starts to hurt the fingers. Needless to say, they are NOT the most comfortable things to hold in place for 20 to 30 minutes. I'm laying there on the table as I'm getting my radiation thinking, "There is no way I'm putting up with this for six weeks. There has to be a better way to do this." After a day or two of pondering, the solution came to me; gloves. Not just any gloves, but batting gloves. So, I think to myself, "self, where can you get batting gloves from? Yeah, you can go and buy a pair of them at the sporting goods store, but those would be new gloves, not broken in and no real sense of success. I need gloves that know how to win. Where can I get a pair of batting gloves that fit the bill?" In a flash it hit me. Nick. I can call Nick and see if he has a pair of batting gloves he's not using. Actually I talked to Steve, who talked to Nick and brother did they ever hook me up. It wasn't batting gloves that Nick sent, it was his football gloves from last season. These gloves are "winner gloves". The reason they are "winner gloves" is that last season Nick was a sophomore and it was the first season for his school and its football team. Not only did Nick make the Varsity team as a sophomore, he played in all aspects of the game; starting on offense (wide receiver), defense (cornerback) and special teams. He did it all and he did it all well. He scored his first touchdown and did alot of other things with these gloves and for him to lend them to me means alot. I'm going to have to take care of them so I can get them back to him when I'm done. He also took the time to sit down and write a note of how he felt like a winner when he did what he did while wearing the gloves. Nick doesn't say alot, so for him to do something like that means alot to me as well.

The gloves weren't the only thing in the envelope. Tucked in with the gloves was a folded up note from my brother, Steve. As I start to unfold the note, a coin falls out. A Challenge Coin. Not just any kind of challenge coin. It was a Hamilton County Police Association S.W.A.T. Challenge Coin. For those of you that don't know, my brother is a police officer for the city of Wyoming, Ohio (that's a suburb of Cincinnati). He has been with them for 12 or 13 years. For 10 or 11 of those years, he was also a member of the Hamilton County S.W.A.T. team. In order to earn one of these Challenge Coins you have to show "courage and commitment above and beyond the call of duty". Needless to say, there aren't very many of them out there and for him to pass something this special on to me is deeply moving. The note itself is also deeply touching. Why would a note touch me? Well, in some ways Steve and I are complete opposites. Whereas I could talk on and on and on, Steve is a man of very few words and he often lets his actions speak for him. For him to sit down and write a note of encouragement to me and send it with the gloves and coin means the world to me. The note and the coin is what actually left me speechless and teary eyed. Katie was moved just as much by it when she saw it and read the note when she got home from work.

These two gifts I have been given say so much without saying a word that no word or words really seem to fit. Appreciative, grateful and humbled could describe some of it, but I think the word that fits the best is blessed.

Citius, Altius, Fortius.

Oh, the difference a day (or two) makes...

So, Friday and Saturday I'm so bone tired exhausted that I spend most of those days sleeping. Wake up on Sunday feeling like dog dirt, but we had an Orioles game to go to so I get ready and we go, not really knowing how I would feel or react to the day, and wouldn't you know it, I felt better as the day went on. Go figure.

We had to make some adjustments to the day for me, but it was a very good day. It was a hot day, the high was 93. We took water with us and the Oriole's had people handing out free cups of ice, so that helped keep us hydrated. Since I am not supposed to be out in the sun for long, we stayed mostly in the shade, which made things about 10 degrees cooler and we left after the sixth inning. Good thing about leaving early is that since the game went extra innings, we got home in time to see the end of the game on t.v. The day was good, not only because we all had a good time, but because for those few hours, sitting there in the upper reserved section with the other Dugout Club members, things were normal. I never knew how nice normal could be.

So, here we are on Sunday night staring down another week of radiation and the weekly chemo on Tuesday, but I can face that knowing that there are days like this that I can not only hold onto, but also look forward to having.

Onward and upward....

Whole lotta waitin' goin' on...

For those of you who have been waiting with baited breath for me to tell you what the hospital experience was like, I can sum it up in one phrase for you; "Hurry up and wait". That was the extent of it. Thanks for stopping by. *waves*

Oh, wait, you want details... Gotcha. ;)

Well, like Katie said, I didn't put enough of the numbing cream over the port site and paid for it. Not only did I pay for it when they were using me as a pin cushion (we'll get to that one in a minute), but also when the nurse was pressing around it trying to find exactly where the port was. If I didn't know any better, I would swear that she was actually trying to rip the thing out with how hard and how deep she was pressing. To say it hurt is an understatement. Ouch.

So, they find the port site and decide to insert the needle (even though she knows I didn't use enough numbing cream). I'll spare you the details, but let's just say that was NOT the most pleasant thing I've done. OW! Of course, this being me and my luck, this stick didn't go in correctly, so they have to do it again. Fortunately, the nurse decided to put more numbing cream on and let it "soak in". This begins the waiting. It normally takes about an hour or so for the cream to take full effect, so almost 2 hours later a different nurse, one that specializes in I.V. placement, comes in and tries to insert the needle. Guess what, that one didn't go in right either. Guess what else, it was NOT a pain free experience. OW! So, we're on try number three, and FINALLY they get it right!!!!!! YAY!!!! Turns out the reason the first two tries were unsuccessful were because they were using the wrong sized needle! They were using a 3/4 inch needle when what they really needed was a 1 inch needle. Don't you just love it when you're the experimental pincushion. OW! OW! OW!

After getting the needle inserted and everything set up, they finally started the process. First thing they do is they make sure you are properly hydrated. Hydration is important because one of the side effects of Cisplatin (that's my chemo medicine) is kidney damage. So, the first thing you get is "pre-hydration", then you get the Cisplatin, then you get "post-hydration". A very time consuming process. A process made even more time consuming by the fact that you are in a hospital and the poor nurses are running around trying to deal with a bagillion patients and everything else that nurses have to deal with. Throw into the mix a 2 pm radiation appointment and you can see why this is an all day affair. *sigh*

As for the chemo itself, it's a tricky little thing. It likes to sneak up on you and crack you over the head with its side effects with no warning whatsoever. It is literally like stepping off of a cliff. Take Tuesday night, there I am in the hospital, feeling pretty good for someone with cancer, when "BAM" I got hit with the exhaustion stick. And it was quick. There was no build up to it. One second I was fine, the next it was all I could do to get into bed so I could sleep. Then there was Thursday. I wake up feeling great. Go to my radiation treatments and come home to finish getting ready to go to work when the "digestive difficulties" Katie mentioned hit me. I had to use the bathroom 4 times in a 2 hour period, each time things got a little "looser" shall we say... Yeah, we'll go with that. I was at work for a grand total of 20 minutes before I told the boss that I needed to go home. When I got home, Katie had the immodium, gatorade and my anti nausea medicine waiting for me. I took those meds, drank the gatorade and crawled into bed. Next thing I knew it was 7 pm. Where does the day go?

Now, if I could just shake this "tiredness" (exhaustion is more like it), I'll be good to go. :-)

We now return you to your regularly scheduled programming...

it's not the war you aim to win, but the battles along the way...

It's Katie... We've had a few people mention that we have not posted anything in *gasp* 2 days!

Well, treatments began for Ken a couple days ago, and I suppose it's better to hear from him how they went. I can tell you this... I know we did not put enough numbing agent over the port site, and the needles look like straws. Needless to say, Ken winced a bit when they tried accessing it. I only saw once, but he said it took them 3 tries to get it. Using a needle that was too short, initially.

The application of the chemo itself on Tuesday seemed to take forever. As of early this morning, Ken was doing fine from it. But after we came back from the radiation appointment, a few of the less pleasant side effects kicked in. Ken tried to go to work, but ended up coming home with um.. shall we we say "digestive difficulties", and some nausea. He took the meds for that, and had to come home in regards to the other. A dose of immodium, a bottle of gatorade, and a full day's sleep later, he seemed to be doing a lot better. Exhausted still... but fine, over all.

Just wanted to let everyone know...

D-Day is here. The ground war kicks off @ 0800.

Well, the "wake up" is finally here. D-day. All the aggravation, frustration and prep work has led to this. We've known all along that everything I have gone through has just been "advanced recon", preparing for the main assault that commences this morning.

Ok, enough with the military comparisons, I'm starting to feel like I'm narrating a show on the History Channel or something. Here's another way to look at it. This is like a pro wrestling storyline. You have me playing the "babyface in peril" (that's the good guy) and the cancer is the "heel" (that's the bad guy). Well, the heel has been getting the better of the "face" time after time, so the "face" goes to a couple of "tweeners" (two guys he really doesn't like b/c they act like bad guys, in this case, that would be the chemo & radiation) to help him beat the "heel". Now, the "face" has big time reservations about this. He doesn't like how they do things, nor does he like their tactics. He's also not sure if they'll do their jobs. Will they have his back when it comes time to fight the "heel" or will the "tweeners" turn on him and hang him out to dry. However, after being beat at every turn by the "heel", the "face" feels he has no choice but to fight fire with fire, so he decides if doing business with the "tweeners" is the price he has to pay, then so be it. That is how bad he wants to beat him. This is a pretty predictable storyline. The "face" and "tweeners" start off well, but then hit a rough spot where the "face" really wonders why he teamed up with them in the first place, but the "face", being the good guy and all, decides to trust his new "tweener" partners and eventually they beat the "heel" rather soundly, usually in a "gimmick match" (steel cage match, falls count anywhere, Hell in a Cell match, etc). Yeah, that's what this is like.

All kidding aside, I know that this morning is kicking off the biggest fight of my life. To be honest, only an idiot or a fool would say they weren't scared. While I'm scared I'm also anxious to get this started. The road ahead is full of unknowns and once we get the ball rolling on this, we'll be able to answer those unknowns and get this cancer beat. I know I'm going to have days where I feel absolutely wonderful and wonder what the heck people were talking about when they were telling about all the "awful" and "horrible" side effects of the treatments. I also know that I am going to have days where I will know exactly what they are talking about. The one thing that will remain the same throughout all those days is this: I am walking out of this battle a WINNER. There is no doubt about that. The resolution of this battle has already been decided and written in stone, yet cancer wants to fight this fight anyway. All, I have to do is persevere and see things through to the very end. I have my team in place (that's you, in case you forgot or something). All the preliminaries have been taken care of. Battle plans have been finalized and have been put into play. All that remains is to go to battle. We're ready. I'm ready. Trust me, when we're done we will have the head of this cancer mounted on stick for the world to see.

"Look into my eyes. I've set out on my path. There is no "can't", no "won't" on the road I walk. Can you see it? I can."

Semper Fidelis.

"Moti, moti, gotta lotta motivation..." What a day!

You ever have a day where you wanted to do something and just have everything go right, better than expected even? Well, we had that kind of day today.

I woke up around 4:30 am with an idea. Since this is my final Sunday before the radiation & chemo start I decided that I wanted to do something special with the family today and get some motivation for Tuesday. I thought it would be a good idea for us to go to Washington D.C. I went back to sleep and got back up at 6:30 am. Katie was awake so I talked to her about it and we hatched out a plan to do this as cheaply as possible (getting lunch stuff @ Walmart, etc, etc), got the kids up and by 8:30 am we were on our way. (The cool thing about living so close to D.C. is that we were able to do this for almost nothing.)

Our first stop was the U.S. Marine War Memorial (a.k.a. Iwo Jima Memorial) in Arlington, Va. This is where the motivation comes in. We get there close to 10:00 am and as we are approaching the memorial, Lilli is looking at it and says '"Dad, there are troops down there!" I thought "Cool, we'll get to talk to a couple of Marines." Well, what we walked into was one of the coolest things we could have done. Those troops that Lilli saw were both Marines and Sailors and they were there for a ceremony. At first we didn't know what the ceremony was for. Then when they called "Attention to Orders" and started reading the warrant, I realized what kind of ceremony we had walked into. It was a Commissioning ceremony. We got the privilege of watching a young Navy R.O.T.C student become a 2nd Lieutenant in the Marine Corps. It was a really cool thing to watch. It was emotional. Katie had to wipe the tears from her eyes a couple of times. I felt proud to be there. After the ceremony I had a brief chance to talk to Lt. Cain (that's who the ceremony was for). I congratulated him and let him know just how motivating watching his ceremony was. I also let him know that even though he had only been a Lt. for about 10 minutes he had managed to help motivate me in my fight. It seemed to genuinely touch him. After I had talked to him, his Captain came over to me and we talked for a bit. He let me know that Marines do take care of their own and if we ever needed anything to contact him at the George Washington University Navy ROTC and he would help us the best he could.

You would think that would be the highlight of the day. Normally, yes, it would be, but not today. After the Memorial we went over to the Netherlands Carillon, which is next to the Marine Corps Memorial. This is a gift from the Netherlands to the U.S. for liberating them in World War II. Katie loves Carillons and enjoyed seeing it. We then headed into D.C. proper to walk around the National Mall. I have heard horror story after horror story about driving and parking in D.C. so I was expecting a massive headache. That was not the case today. Traffic flowed very smoothly and it only took us about 15 minutes to find a nice little parking spot on the street!

Walking through the Mall was just a great experience as well. While it was hot (97 degrees), we were able to deal with that by bringing water and Gatorade with us and staying in the shade as much as possible. We ate lunch on the Mall, which was a neat experience. We walked up to the Washington Monument and back down to the Lincoln Memorial, stopping to see the White House, World War II and Korean War Memorials.

When our water ran out, we bought some from a vendor so we could stay hydrated in the heat. Well, Lilli was saying that she didn't feel well, so I poured some water on the back of her neck. She didn't like that. She told me that when I pour water on her I should pour it on her head. So, I poured it on her head and the kid loved it! She stopped not feeling well. Felt much better. She kept wanting me to pour water on her head in fact. Hey, as long as it kept her cool and kept her from complaining, why not.

The girls also got to see and pet a Park Police horse and we saw a crazy duck in the Reflecting Pool. This thing must have wanted something on the bottom in the worst way. He went down 3 or 4 times to get whatever it was and every time he would all you would see of him was a small portion of his tail and his feet just kicking back and forth trying to keep his balance. He was one odd duck.

All in all it was an outstanding day! I will take at least three memories from this day though;

1) Lt. Cain's Commissioning ceremony

2) Standing there in front of the Lincoln Memorial as our day was winding down pouring water on Lilli's head and her just loving it.

3) In the car as we were sitting in traffic heading out of D.C., Emily reaches up, grabs my shoulder and says "Thanks for bringing us here today Dad. I had a really great time."

One and a wake up.

Teaching class and getting the tube in...

The teaching class Katie & I went to Thursday was very informative. Katie actually covered most of what they went over, but I was really surprised when they told us that the chemo was actually being used to "grab onto" the cancer and set it up for the radiation to kill it. We're sitting there listening to this explanation and the nurse was doing a great job, but it was just so long. After she was done, I looked at her and said "so it's like a two on one beat down. The chemo grabs it and holds it for the radiation to knock it out." The poor girl must not have ever heard it described quite that way, because she sat there for a minute and was like "um, yeah, that's what is happening."

Friday we finally got the tube in, in spite of the anesthesiologist doing everything he could to delay it. At first things looked like they were going to go pretty smooth. We got there on time, filled out the paperwork and they took me back in short order. Then we met the anesthesiologist. Katie called it a "god complex", I think he's just an asshole. First, the guy demanded that he see all the records from my previous surgeries. Apparently he thought I wouldn't be able to swallow the intibation tube or something. After seeing those he insisted that I be moved from the little operating suite I was in to the main operating room. I have no idea why. He never bothered to explain himself to me all I know is that it put us behind schedule. Then there was the mixup on the eating instructions. I had been told no eating six hours before the procedure, so since the procedure was at 3:30 pm I had breakfast and was done eating by 9:00 am. He blew up at me and Dr. Corkum when he found this out. He said it was supposed to be eight hours and absolutely refused to do anything until 5 pm. This was at 4:20 pm. He then needed to draw blood to check my electrolytes. While talking to me he was just so condescending and arrogant. Then there was the way he treated the nurses. Whenever he needed something, there was no "please" or "thank you". He was just down right rude.

When I was coming out of the anesthesia he was there. I then proceeded to tell him exactly what I thought of him; that he was an asshole. He asked me how was he an asshole. I told him that while I understand him being a stickler for the rules since I am one myself, it's all in how you do it and that he didn't treat people well. My nurses apparently think the same thing about him, because they loved the fact that I told him what I thought.

So, the tube is in, all the preliminary appointments and classes are out of the way. All that is left is to wait until Tuesday when the chemo and radiation start. It's just two and a wake up.

tubular...

Hm... Yesterday was a seriously long day. And it gave the girls a little perspective, I hope, on how "stuff" regarding this does not always go as planned. We can make all the plans in the world... but right now, our world revolves around Ken. That little tidbit it proving difficult for an 8 year old to wrap her ever expanding mind around.

Started with me having an appointment of my own, that was seriously delayed, as often happens, right. Well, we had kind of tightly scheduled yesterday, because up to this point, things with Ken have run relatively smoothly. Well, yesterday morning should have ben a harbinger of things to come, but I failed to see the foreshadowing. So, having to put off some much anticipated shopping (well, anticipated by Lilli... dreaded by me...) was the equivalent of the world ending, and she could not understand why we "had to wait until we got Daddy home from the hospital!" (That phrase, to be understood properly, must be read with tears in the voice, and just the proper amount of whining...)

Once that little fire was put out, we had to focus on the rest of the day. Ken was scheduled to be up at GBMC at 2:30 for a 3:30 insertion of the feeding tube. I had hoped to send Lilli to a friend's so she would not have to either stay home with Emily for an undetermined amount of time, and I had asked Emily to go with me. Had some errands to run within the hospital, and I knew Ken would like at least one of them to be there when he woke up. But, being that the plans themselves were relatively last minute, I could not get hold of our friends, and I just did not want to leave the girls home. I had no idea just how long we would be at the hospital. So... I took them both with us. Ugh, right?

Honestly, I think from an objective point of view, minus some minor drama with Emily... (My head hurts... my stomach hurts...I personally think it is stress...), overall, they honestly both did well. However, from the perspective of being stressed to begin with, an anesthesiologist who had a god complex, and wondering how to entertain an 8 year old in a surgical waiting area... it was not the most pleasant. But, happily, we did manage to make it home, a little over 5 hours later, all in one piece.

As for the anesthesiologist, I realized from the get go that he was going to be a pain when he started demanding past records from the nurses, regarding Ken's previous procedures. He, in my opinion, was making issues where none existed (I know even at this point, the nurses agreed), and demanded that Ken be moved from the surgical area where was scheduled, up to a regular OR. Producing the first in a series of delays instigated completely by him. He started harping on getting bloodwork on Ken, which no one had ever wanted before, and frankly was totally unnecessary. Then he was nasty over the fact that Ken had been instructed to not have anything for 6 hours... not 8. Another delay. And from what Ken told me later when he was lucid, the guy was just a creep. Never said thank you to any nurse whom he had ordered to fetch him something, and just causing delay after delay. Finally, Dr. Corkum said "Enough is enough", and got the surgery started.

At first, at 5, I was told that it had not started, and we were looking at several more hours. (enter yet another tantrum...) but luckily, that proved to be misinformation, and by 5:30, Dr. Corkum came out. I swear, the first sentence out of his mouth was (And I quote:) "That anesthesiologist was a pain in the ass!" He said everything went fine, and we'd maybe be another hour, 2 at the most. (It was 2... but we survived.) Shortly after, the nurse came out, kind of chuckling, and actually directed her next information at Lilli. She said Ken was waking up... and waking up talking. Incessantly. And repeating himself. Like, to the point that they have to keep shushing him. She thought Lilli would get a kick out of that. (Ken also informed us that he also said the anesthesiologist was an "asshole", which apparently he said loud enough for the guy to hear. Ken said he was passing it off as being "under the influence"... hahah)

In just a little bit, they took me and the girls back, and Ken was sitting up, drinking, and relatively coherent. His nurse gave us a little more instruction on the tube, walked through flushing it with me, and we were sent on our way.

Overall, things seem to be going ok. Ken had some pretty intense pain last night, but after working with him (read: sleepily, on my part, suggesting that he raise himself up a bit), and perhaps the pain medication taking a slightly longer time to kick in, he got a few hours sleep. But he woke up and has been watching tv for a while. I expect he'll spend a fair amount of time sleeping today.

well, finally some info that we can use, and makes sense!!!

Yesterday, Ken and I headed up to the infusion center for one of a few "teaching sessions" we need to get through this whole process.

Ken will have to refresh my memory on the nurse's names, but the two women who talked to us yesterday were priceless. Some info that we can finally understand and use:

The "peg": USE IT. From the get go. Do not WAIT until you feel you need it. It is your friend, and it will be your lifesaver. One of the highest nutritional priorities is hydration. Even in a healthy person, of course it is important, but now it takes on a whole new light. Hydration helps stave off nausea, or at least in some small part, it does. (I'll get back to that.) Especially when a person does not drink enough water orally, we now have a "convenient" method of making sure he gets it.

2 things regarding the chemo itself: #1, the reason it takes SO long to get it, even tho the medicine itself only flows for an hour, is because bracketing the actual infusion is an hour or more of iv fluids. One of the important things about the medicine itself is that it has to be completely flushed through the system. Therefore, a LOT of fluids are a must. The other thing... why chemo and radiation together.. and FINALLY some one explained to us why they are admitting Ken the same day as the radiation starts. turns out, that in this case, the chemo medicine itself helps potentiate the function of the radiation.

Here's how it works: I liken it to something we learned years ago regarding nutrition. For some reason, certain vitamins and minerals are absorbed better by our bodies in the presence of specific other elements. For example: in order to make sure your body absorbs iron the most efficiently, take an iron supplement with a glass of orange juice. The vitamin C in OJ for whatever reason, increases the body's absorption and retention of iron. Much like this: The chemo "sensitizes" the cancer cells to respond to the radiation, thus allowing the radiation to more effectively kill the noxious little buggers. THIS is why they changed his chemo appointment to be initially before his first radiation treatment... not in the day or two following.

So... The chemo is likely to make Ken very nauseous. In small part, adequate hydration will help alleviate that to a point. but it also helps him "maintain" if he does start throwing up, or develops the other, um... bowel related complication. He just needs to maintain hydration, and calorie intake. Now is NOT the time to to lose weight.

We went over some info regarding his portacath, infection information... a few less "exciting" details.

But we have to be back up there today to get the feeding tube inserted. More on that as the "news breaks".

baby steps. Better than no steps.

Well, saw the G.I. doc today. Not a bad guy. Wears a bow tie, which I think is pretty cool. He is also a native of Massachusetts (the accent was a dead giveaway). He pretty much admitted that it was his staff that dropped the ball when it came to the miscommunication over what this appointment was supposed to be. He explained how the procedure is supposed to go and what to expect from it. The funniest part is that while he was explaining everything to us he was doing his exam of me. Apparently that went right over Katie's head, because when he was done explaining he told us we were done and could go, she looked at him and asked, "I thought you wanted to examine him?" To which, both the doc and I had to tell her that he did the exam while he was talking to us.

His office set the procedure for the feeding tube insertion for this Friday afternoon. They will call us with an exact time sometime Thursday. Like I said, baby steps...

Reality check...

"All heroes have at least one thing in common. They don't run away from their fears. Heroes are just as afraid as the rest of us, but they have learned how to confront and walk through their terrors. Quite simply, heroes aren't afraid of being afraid. When faced with difficulties, a true hero is able to make courageous choices and decisions. He or she is able to say: "This isn't necessarily what I want to do, but it's what I have to do." Heroes have learned to give themselves to life..." Lama Surya Das (thanks Sherry)

While I do NOT consider myself a hero, I think the quote is appropriate. I was going to touch on this earlier, but things just kept getting in the way or I would forget about it because things were going so well, but the events of the past few days and Katie's post made me realize that I need to make y'all aware of something. While Katie & I wish that all of our posts could be "upbeat" or "positive" or even just plain old boring updates, that just isn't possible. It all boils down to one word: reality. While most of the time we have positive things to report, the reality is that there are going to be days that really try our patience or just really frustrate us. Not everyday will be positive. Not everything we go through will be a success. We will experience temporary setbacks. We will have days that just put us at our wits end. We have decided that one of the things we can do to help us is to post everything that happens with us, both good and bad. That includes telling you about the things that don't go so well or telling you about the things that just make us want to jump up and down and scream.

At first I didn't want to post the things that were not good, because I wanted to only focus on the positive and put the "negative" things out of sight, but the more I thought about it and the more I talked to people about it, the more I realized that it was normal for us to feel these things. I realized that it's ok to get frustrated, angry and scared. I have learned that these feelings are normal and we shouldn't hide them from anybody. We shouldn't allow them to be the way we feel all the time, mainly because that is NOT how we do feel all the time, but to just completely ignore them is just as bad. You can't run from the negative, you have to face it head on.

Why would we want to post the not so good or extremely frustrating things, you ask? Well, it's simple, the people reading this all have one thing in common, you care about us. We want to be honest with people and not hide anything. You're our family and friends. You deserve to know what is going on with my treatments and how things are progressing. When we post about a successful day or a frustrating day we're letting you know how that day went. We're not going to sugarcoat anything or not tell you anything to try to spare anyones feelings (including our own).

This is a battle that will be full of ups and downs. Successes and disappointments. You're important to us and we want you with us every step of the way. In order to enjoy the victory you have to endure the hardships.

Frustration, and treatments haven't even begun.... (Katie's POV)

You know.... I am hoping that from a "time" standpoint, getting everything set up and in order is the "hard part". Besides the "hard part" of the treatments themselves, for Ken...

I suppose, in some ways, I have no right to complain. It's not my body that is about to be ravaged with foreign objects, poisons, and various other assaults, but I am a part of waging that battle. To me, good preparation is a big key. All I am asking is for everyone to be on the same page, and explain things thoroughly to us, so we know what we are facing and when.

One problem I am having right now is my 'work". As we know... I am working retail right now, out of necessity. Extremely low paying, which is insulting to me, but I realize, I have to do whatever I can right now. And, they want any type of scheduling request very far in advance, like 21 days. Well, guess what... with all that is going on, we end up with appointments being made out of the blue, and well... someone's body deciding not to co-operate. (Now, see, the thing with not being able to insert the feeding tube last week... Ken had no control over that. I think Dr. W. was completely correct to err on the side of caution. However, it is the source of the latest frustration for both of us...)

When Doctor Williams told me he could not do it, he said he was referring Ken to a GI specialist. That much I understood. Well, Ken and I have tunnel vision, and when he finally got through to the office, they told him they were setting up the procedure for in office (which kind of jibed with what Dr. W told us... that they have "suites" where it can be done.)

But Ken and I have tunnel vision right now... the "target" is getting that tube in place, and we were not considering certain details... like the fact that asking a surgeon to perform a procedure on a patient based on never having seen them or anything, would be crazy. But, the office assistant on the phone last week told him that she was scheduling the insertion for tomorrow. I have no idea why, but something did not sound right to me, so I knew I needed to call them yesterday. Well, the doctor called us, and said there was a misunderstanding (gee, ya think???) and tomorrow's appointment was simply consultation. That can potentially throw a real wrench in plans. we won't know anything else on that until tomorrow.

Speaking of miscommunication and changed plans... the other thing that kind of upset me is that they have now scheduled chemo and radiation to begin the same day. We were told that Ken would have radiation beginning on the 11th, and chemo would start "within the next couple days". Well, I put in a schedule request based on that. However, when he asked later about the chemo, they told him it was also for the 11th, and we needed to be there at 8 a.m. instead of 2 p.m. like we had been previously told. Now, initially, it really bothered me, because in the back of my head, I am thinking, dear lord, I just put in the request, saying I could work Tuesday morning. (Luckily, this ended up not being an issue, this time, thankfully.) In addition, I am worried about how it is going to work out for him that they want to begin them both the same day.

And I have something to say, in regards to "work". Nothing is more important right now than Ken and his treatments. However, we have a family to take care of, and we need to make sure we have a place to live, a way to feed them, and all the other "fun" stuff that comes along with having to ensure we have some source of income, no matter how small it is. It galls me to no end to have to worry about a retail schedule when it comes to "fitting it in" when it comes to Ken's treatments. Those are first, but the work schedule must be addressed as well. It is a source of frustration,and yes, I will be showing frustration a lot during this entire process. I don't think it would be healthy for me, much less realistic to expect, that I will not get upset, irritated, and even angry throughout this. Sometimes, that irritation may seem to be misdirected, and while I wish that were not the case, it is reality. I am human, and I am going to falter along this way. It may not even be pretty to watch at times. But it's the reality of the entire situation, and I cannot and will not make apologies for it. All I can promise is that I am giving it my best, and between Ken and me, his cancer will be beaten come hell or high water. I just know it won't be fun or easy.

It's going to be a long rest of the year... for everyone...

We're set for treatments to start.

Well, the final prepartory appointments are set for this coming week, as well as the appointment for my first radiation and chemotherapy treatments. This coming week is still prep work. I have a dentist appointment Monday @ 8am for a cleaning. Why do I need my teeth cleaned before my treatments, you may ask? Well, the radiation can cause tooth decay and the cleaning, along with the daily fluoride treatments I am doing are to help minimize any decay the radiation may cause. Wednesday, I get to go to the gastro-intestinal specialist so they can put the feeding tube in. Yippee. Trust me, I know I need it, but that doesn't mean I have to be happy about having it. Thursday is the "teaching session" given by the infusion center. This class is to help us understand the chemo and its side effects better. I think there is more to the class but I really can't remember now. When I do find out more about it I'll let y'all know.

Then there is August 11th, @ 0800 (that's 8am for you civilian types). That is when the battle with cancer will be well and truly joined. This is the date for my first radiation and chemo treatments. These first appointments are done as an inpatient procedure. After that my radiation treatments will be daily @ 8am. Chemo treatments will be weekly, the exact time is still TBD.