A Long Week Away

1/21/08 Today began my long week away from the family. I was accepted into a research study conducted through the Cystic Fibrosis Institute in Chicago (for a more in depth explanation on CF, read "Mark's Testimony" found on the left hand side of this page).

We've been getting ready for this week since last September (it will occur again the last week of February for part II). We knew it was coming, but that didn't help our feelings as I pulled out of the driveway this morning, or hugged Madalyn last night when I put her to bed.

The study is quite interesting to me. As many of you know, I take enzymes with every meal to help with vitamin absorption and food digestion. I've been pancreatic deficient my entire life, and I've learned to play the cards that I was dealt. I feel so horrible when I don't take the enzymes that it makes it easy to remember them.

The research study will test a new enzyme pill that is "purer" in form, hence they are looking for improved digestive qualities and the need to take less enzymes (I take 6 with each meal currently - the new medicine will require 1 capsule taken 1/2 through the meal). Part 1 of the study, which I'm doing at Evanston Hospital near Northwestern University will test me with no enzymes for a week (thus setting a baseline), then I will go on the experimental drug for 3 weeks and then go back in the hospital, where they will test the efficacy of the medication. If the medication works, they give me the pills for the next year for free and they will compensate me for my time and mileage driven, as I will return about every 2 months for a check-up.

I did my pre-admission physical this morning, and I get checked in tomorrow morning at 7 am, and will be inpatient until Sunday, when I will be let go. I thought it might be fun to record any funny stories or unique experiences that I'll have in the upcoming week. Different days will be color-coded to make it fun. Today, obviously will be in black.

5:30 Left this morning, and drove to the CFI in Glenview. Got there by 8:15. It was 160 miles one way. Dr Boas (the head of the facility) did a physical and took blood. No biggie, but as a lab consultant, I had many things to share on equipment choice and technique, but I had to hold my tongue. I didn't even mind that he's a Boston Red Sox fan...he was wearing a Garfield tie.

9:30 Done at CFI, called my buddy Brian (a college roomate), and I will be staying with him tonight. He'll be done working around 2ish, we will meet up at the Sears Tower at that time, where he will show me around his office where he works. Will go out to eat tonight somewhere.

9:45 Drove to my office at the U of I Medical Center. No one was there since it was MLK Jr Day. Funny, I don't remember anyone mentioning to me that this was a holiday. At least now I don't have to take 5 days off, only 4. Yeah for me. I saw my supervisor for like 30 seconds. She was interviewing some guy for a billing position. Yes it was awkward. I took off. Found out that I had parked for 21 minutes in the parking lot. Yes, that cost me $3.00. Had my office been open, I could have gotten a free parking pass, or if I would have gotten out of there in less than 15 minutes, it would have been free. Down with Chicago.

10:29 Went to McDonald's to get a sausage/egg/cheese McMuffin. Easily one of my favorite top 5 sandwiches in the world. Evidently my TomTom lead me to a bad McD's. I walked in and got a ton of stares from the TONS of people in there (evidently ALL the people in this particular neighborhood on the west side of Chicago were honoring Martin Luther King Jr, because they were all in no hurry....at all, whatsoever. I don't think many of them worked anyways.) I stood in line for about 10 minutes where I was called "hey brother" from everyone there soliciting money from me, many times. I quietly declined. A Chicago cop walked in right behind me. I felt much better, especially after I noticed the .44 hanging from his belt. He was a very large man. I felt small. And out of place. FINALLY, the line budged and I was pushed through to the front of the line. I kid you not, EXACTLY as I was ordering my precious sandwich and coveted coffee, some nice lady (I'll call her Myrtle for reference) reached up and flipped the overhead signs to the lunch menu. I kindly asked what time they switch, and Myrtle said "10:30." I looked at my watch and it said 10:29. I kindly asked for a #2, and she asked if I wanted a large fry. "No, you don't understand" I replied. I don't want fries, or a burger at flippin' 10:29 in the morning, "I want cream in my coffee." She said that they were on the lunch menu now. I was screaming in my head at this point, and had Earl or Carl or whatever his name was in front of me, made up his mind before the 20th century, I would have qualified for the breakfast menu. Argh. Evidently, with someone as pale as I am, you don't get any sympathy when you were in the neighborhood that I was in. Had the cop not been there, I probably would have gotten mad at Myrtle, or asked for a manager, course had the cop not been there, I may not have had my wallet either... I counted my blessings, and then when I sat down, found out I had to pay for wi-fi at McDonald's. Argh. I left.

11:30 I drove out to Oak Park where I used to live when I did my internship up here. Found my old stomping grounds (Caribou Coffee) and noticed that there was a new Borders across the street. I was like, "sweet, Borders has wi-fi for my laptop." I crossed the street to find out that I had to pay for wi-fi there too. Oh well. I found an awesome book on the power of persuasive sales technique and read for a couple of hours. I also realized when I walked into Borders that ALL the alarms went off when I walked in the doors. Evidently, something in my computer bag signaled a stolen item or something. No one really cared, since I was walking in. As I got up from reading, a horrible, dreading feeling swept over me. How do I get out? I searched through my bag and found the culprits. I had seasons 1,2 and 3 of The Office and Rudy. Drat, how do I do this, Borders sells movies? Hmm. I hadn't opened Season 1 of The Office yet, so I opened that, and I left the packaging on Rudy, since it clearly stated that it came from Wal-Mart (all of them were Christmas gifts, and I planned on watching them this upcoming week). I put them back in my bag and came up with a well devised plan. I calmly walked up to the counter and explained the situation. I told the guy that if I walk out, all the alarms will go off because of something in my computer bag, and is it ok if I just keep going? (Sounds a little suspect if you ask me, but honesty never hurts). He looked at me with that "inquisitive, what they crap are you talking about, look" and shook his head. Sure enough, about 3 inches from the exit, my ear drums rattled with the alarms, I calmly looked at him, waved, and he allowed me to exit. I quickly crossed the street to Starbucks (they can take away my sausage, egg and cheese sandwich, but I refuse to let them have my "Office" seasons!)

2:15 Walked across the street to Starbucks (where they are KNOWN for their wi-fi). They didn't have any connections either (at least this time I didn't buy any coffee like I did at Borders). I was able to log in to the "Caribou Coffee" wi-fi across the street. I knew I liked them better than all the rest!

3:00 Caught up with Brian at the Sears Tower. Parking cost $10.00 for parking, but what they hey, right? He took me up to his office on the 68th floor. It was awesome! Oh my goodness. He told me that it gets old after awhile. At least he HAS a window in his office...

For the rest of the evening, we bummed around down town, had a soda at this cool retro bowling alley/pool hall type ordeal. It sounds stupid, but it was awesome. Of course, I announced to everyone that I was married, not to the man sitting with me. (It is weird for two guys to go to something like this together evidently. I was trying to preserve my testimony...I didn't want to get hit on by some guy named Luscious.) We ate italian at La Bocca. Again, it was delicious. I took him to a couple of stores, and we did some shopping, then went back to his place and watched the Bourne Ultimatum on his big screen with surround sound. In bed by 11:00...my stomache is going berzerks...

Tuesday 1/22/08 1:00, 2:30, 4:30, 6:00, 6:05, 6:16 am The affects of not taking medication hit me like a mack truck on a Coke can last night. I won't go into the details, except that I was exhausted when the alarm went off at 6:00. I got ready and jammed out at 6:20. Tommy TomTom said that it was 10.6 miles to Evanston Hospital and would take 25 minutes. Bologna. It snowed about 3 inches last night, which means only one thing in Chicago: people drive 3 MPH. I was going crazy in my car. At 6:50, I still had 8 miles to go. Things started clearing up by 7, and I got here at 7:30. The other guy that's doing the study with me (we'll call him and his wife "D" and "K" - she's staying with him all week) didn't get here till 7:35, so I felt better about that. I made it up to my floor, and found out that they didn't preregister me, so I was at a standstill for about 30 minutes. Very, very hungry at this point, as I had to fast. Argh. They also found out that I had not brought all my meds with me that's on my list. I didn't bring them because I don't take them, they aren't necessary. They made a hissy fit about it. My body, my rules. Then we started the dreaded 3 hour starch test...

This was not fun. at 9:45, they put in 2 IVs (the first one blew) and they took blood, and then they had me eat 4 1/2 slices of bread (150 grams of carbs) in one minute with a glass of water to wash it down. Then, they take blood every 15 minutes for the next 3 hours to see how my body processes starch and turns it into sugar. I don't know but by 12:45, I hadn't eaten anything but the bread, and I was grouchy at the world, plus the affects of not taking enzymes (and eating italian) was full-time now.

The other event so far was getting internet connectivity. I brought the lap top with me, but there weren't any wi-fi connections that would let me on. They gave me this wi-fi card, but come to find out, the subscription has expired now, so it wouldn't let me log in either. They have a kiddie room at the end of the hall with connectivity, but I need my computer to log in to the the mainfraim at the UofI to check my work email. Found a business center in the hospital, but it requires a patch cable. Argh. I tried to disconnect the cable from the existing computer, but found out it was secured onto the computer case (evidently, other people have tried this before). I boldly went to the concierge for a last ditch effort. She was like, "oh yah, we have those." She asked for ID. I let her see my patient wrist band. She shook her head, but let me have it. That's where I'm at now. I think I'm going to go get some more food and soda, since after today, I'm on a very restricted pre-planned diet and I can't eat any more or less than what they give me. From the looks of it, I think I'm going to be hungry...

7:00 Watched "American Idol" with D & K. It was fun. Read for a bit and went to sleep around 9:00.

Wednesday 1/23/08 9:35 am Oh my goodness, what a night. I only slept about 6 hours last night. Was up a couple of times using the facilities designated for a domestic cause. Woke up at around 3:30 am and couldn't get back to sleep. Read for a couple of hours (catching up on reading through the Bible. I'm supposed to be through Numbers by Saturday night and I'm only finishing up Exodus now.) I took a shower around 6:30. That felt REALLY good, except that 1/2 of the streams that came out were hot and 1/2 were cold. That wasn't pleasant. I've been getting a number of phone calls from work this morning, so that's been keeping me busy. I've been getting so many calls actually that I don't think I will take today off either. It's been crazy. All kinds of emails to follow up on with work too.

Got an interesting phone call last night before I went to bed. A buddy of mine in Chicago called me about a new business opportunity (an investment club). I'm really interested in it. Essentially, you team up with other investors to help start up companies or projects, and then you split the profits. There's referral opportunities if you bring in other investors, so that sounds nice. There's a WebEx on it tonight that I will dial into. More details as further posts warrant.

I've been emailing Jenn and calling her and Mady frequently. I miss them both terribly. Mady now fondly calls me "dad-E." It warms my heart. I love it. I have a scrap book with me that Jenn made for my birthday with pictures of her and Madalyn in it. I've looked at it many times.

Come to find out D & K like history, and they brought the boxed set of "Band of Brothers" and we are going to do a marathon. I'm stoked about it. I read B of B a couple of years ago, and I watched the series before I met Jenn, so it will be fun to go through it again. I'm a huge WWII buff. Read all kinds of books on the subject.

So, I got my first meal this morning while on the "restricted diet." The nice dietician brought in my tray and sat it down. I didn't know whether to laugh or cry. I felt like I was in the 4th grade again. It's all very exact. She said I had to eat it all. I looked at her and asked if this is the primer, when does breakfast arrive? She replied that this was breakfast. Ok, let me explain, I'm 185 pounds and eat like a famished refugee...every meal. Here's what I am allotted:

2 egg beaters, 2 pieces of toast, 2 sausage links, 1/2 a cup of OJ, a jelly packet and a butter packet.

I made the whole thing into a sandwich and at it all in 4 bites. I've never had a meal where I was MORE hungry after I ate than before. I went to the nurses station and calmly told them I was hypoglycemic, and need a little more nourishment. They stated that I could have grapes and pretzels, which are found in the fridge. I'll lose weight while I'm in the hospital...that'll show 'em.

I can't wait till lunch. The problem is, is that it's 4 hours away...

The afternoon went fine. I am reading lots of books. I finished "The Christian Husband" by Bob Lepine. It was good. I'm trying to finish "The Last Christian Generation" by Josh McDowell. Next on my list will be to finish "Boundaries" by Drs Cloud and Townsend (do you see a theme here?) I ended up throwing away "The Big Bad Wolfe" by James Patterson. It wasn't edifying.

Watched American Idol with D & K at 7:00. Went to bed around 9:00...supposed to be -20 below with wind chill tonight.

Thursday 1/24/08 10:05. Had a great night's sleep last night. Woke up around 6:00 this morning and had some good time to read through Exodus. I'm close to finishing Exodus now. Need to be through Numbers by Saturday night. It will be close. We'll see what happens.

Dr. Boas came in this morning. Wanted to know how I was doing. I passed the blue dye caps last night, so I'm officially starting the study now. He asked how everything was moving along. I said I'm starting to get a little stopped up. He was concerned about blockage, and told me to keep an eye on it. I really like him...he had a Calvin and Hobbes tie on this morning.

Got some work done this morning, so I feel like I've accomplished something fruitful. I miss Jenn a lot. Madalyn just as much. Things are getting pretty mundane. I'm pretty much ready to go home. I'm tired of being hungry with an upset stomach, and I found out I've lost 3 pounds since I've been in the hospital. Down to 182. My lungs are actually doing better now than when I was at home. The extra rest I'm sure is helping, plus I haven't been leaving the house at 6:00 am, so I've been able to do all my meds and treatments faithfully, so that in itself has been a blessing. We'll see how today goes.

Found out that there is a new John Grisham book coming out next week. I'm stoked! I've read every single one of his books...It's called "The Appeal" and comes out Jan 29th.

1:00 Watched an old sports classic, "Rudy" today. Good stuff. Took my first nap of the week this afternoon. Haven't been able to sleep during the day much. Lots of phone calls from work, intruding nurses and cleaning ladies. Slept about 2 hours.

8:00 Watched the republican presidential debate tonight. D from next door came over. We masked up and talked politics. I found the debate very interesting. At this point, I'm leaning towards Romney or Huckabee. Romney had a great debate. There are a few issues with all of the candidates. I won't get political at this point, but I've been following him for about 6 months now and so far, he's got my vote. We'll see.

Finished up Exodus and started reading Leviticus.

Friday 1/25/08 9:55 am. I'm really missing home. It's getting pretty old. Dr Boas came in and chatted with me for about 20 minutes this morning. We talked about his research and being a clinician. He likes the research aspect and knew some of the investigators at Johns Hopkins that I worked with. Very interesting. We talked about his ambitions and his heart. He is really down to earth. If his clinic was closer to home (it's 160 miles away), I might consider switching, but I'm happy at the CF clinic at Carle.

Called Jenn this morning. Jenn is going down to her folks today. She's going to get her hair cut and hang out. I'm glad she is as it will give her opportunity to unplug from Madalyn for a bit. Mady will be at the house hanging out waiting for Jenn to get back. Um, she will be at her folks house with her mom. Just clarifying. I think they are both getting pretty restless and are ready for me to come home.

Nothing else to really report so far. Just counting down the hours at this point.

Got a number of calls for work today, let them go to voicemail, I didn't feel like dealing with issues, besides, I was supposed to be on vacation this week. I will follow up with them on Monday.

Saturday 1/26/08 10:55 I woke up at 6:45 this morning, which was great. I went to bed about 10:30 last night. Only one more day to go!

Dr Boas came in this morning and we chatted for almost a half an hour. He told me that my serum vitamins A, D and E are very low. He was concerned and we talked about some treatment protocols to protect my immune function, sight and bone density levels. He would like me to get a bone density scan to make sure that I'm not getting bone lose. We also talked about other medications and cutting edge research that are out there that I might want to investigate for my treatments. We also talked about the big winter seminar coming up in a couple of weeks. Found out that I have to come up to Chicago on that day anyways, so I don't really have any excuse! Now, if I can find a way to not have to pay the $100 entrance fee for Jenn and I to go, things will be even better!

I got my second round of blue dye caps this morning at 9:30. Now that we have taken them, D and I can eat whatever we want! It is a glorious day! My first meal was a belgian waffle (with LOTS of syrup), bacon X2, fruit loops, 2 boxes of milk and a 2 containers of OJ. I'm stuffed...and happy.

I finished Leviticus this morning, and now I'm moving on to Numbers. One day at a time, you know. Saw some awesome things towards the end of Leviticus regarding the "holiness that God gives us." I will write about it when I have time to update my summary of each book that I'm reading on our reading through the Bible in 2008 blog.

Jenn ended up going down to her folks yesterday and spent the night. Got to talk to Mady a few times on the phone recently. I sure do miss them both. The research nurse, Mindy is supposed to be coming by tonight with the study drug for me to start tomorrow. Dr Boas assured me that he would come in early tomorrow so that D & K and I can go home. Trust me the car will be packed and I will have my coat on when he walks in the room to discharge us...

Sunday 1/27/08 1:30 pm Got home from the hospital. Dr Boas didn't come in until around 11:00 this morning. He got tied up early in the day. It was so good to see Jenn and Madalyn again. Oh, home sweet home. Now the only problem is, is that the study drug doesn't seem to be working real well...I don't think it's a high enough dosage, I'm cramping...