Update

Got the results from the pathology.......it's crohn's. Oh well. Makes sense, and at least I know what it is that I have. The game plan will be different now than if it were Ulcerative Colitis. However, my outlook will always be the same, as positive as I can be! I hooked up with a stoma nurse here in Jackson. She met Charley. She said Charley is everything one would want in a stoma (i.e. all is well). Also had an appointment with my G.I. Doc. He is GREAT. He is the smartest person I have ever met. I am surprised he is not president of the US. I do everything he tells me, exactly like he tells me, and it all turns out to be perfect. I can't say anymore about him, I am the perfect patient.........(he has the address to this site :)

I think it may be time to shut this blog down, as my life is now getting close to being back to normal. Let me know what you think, if you feel like it. I have actually gotten used to posting now and then, and its sort of cool.

Matt

If you are still checking

If anyone is still checking, thought I would let you know, I am doing a little better every day, knock on wood. Amanda, I will be calling work soon to talk with you guys. I over did it a little yesterday, and was reminded that I need to try and take it easy for at least a week or so. I am ready to get back in the full swing, but my body isn't. I lost @20 lbs, so I am a little weak. Not a great way to lose weight. But, I expect to regain it now that I am eating good. I can't say enough how thankful I am to have so many good friends that were thinking about me during this time. It is really overwhelming. Thank you, thank you, thank you. Have I said thank you? Seems like thank you is a weak way to respond to what I have received.

My plan from here is to recover, and go back to talk with my surgeon in several months. Where I go from here, I am not going to worry about right now. I will cross that bridge when I come to it. Hopefully my doctor will tell me what, if any, my options are, and then I can make an informed decision. All I know is right now I feel a whole lot better, over-all, than I felt when I was sick before surgery. I hope I continue to feel this good. The good thing is, through this I learned that Kelly and I are strong enough to handle whatever comes our way (at least I think I am, I know Kelly is!).

There was this one person in the hospital that was going through what I went through, and he was having a tough time. It made me feel thankful that I was doing as good as I was. Sometimes, it seems all relative.

I will post again when/if something new comes up.

We're home! Longer post later, but for now, 'real' life calls! I'm taking Rosemary to karate and Matt is heading out with Will to baseball. That's what it's all about, right?

Oh - and Blockbuster called multiple times while we were gone...we have a movie 10 days overdue. Ouch.

Monday, July 13th

I am no longer in the hospital! I am laying on the bed in our hotel room. Nice, very nice. I can control the AC. Anyway, all is going well and Kelly and I will stay here in the hotel until we fly home Thurs. It is normal procedure for people out of town to stay around a few days after being released just in case something comes up. Another step toward the right direction! Pain is not too bad most of the time. Mainly tight crampy pain around areas of incision scars from surgery. Starts hurting more if I stand/walk around for a time, and obviously is VERY painful to sneeze (have so only once) and cough. Normal surgery pain stuff, if you have experienced it you know what I mean. Should get a little better each day. Am tapering off prednisone, thank god! That stuff is evil, necessary sometimes, but evil. Should be steroid free in 4 weeks or so. More later.

Sunday, July 12

Quick Matt update:

I would be surprised if we aren't discharged tomorrow (Monday). We were kind of hoping for today, but it's 6:39pm & no word on that....so probably not gonna happen today.

Matt is doing great, all things considered. He had the catheter removed today & he's completely off the Dilaudid. He has had to ask for pain medication (percoset) a few times today, but that is certainly understandable.

I went running again today. The driver at our hotel had told me about the Little Italy area near the hospital here. I ran up to that, then kept going & found a very old and VERY BIG cemetery (Lake View Cemetery). It's absolutely beautiful...over 300 acres of rolling hills. There's a fabulous nature trail through the woods. (Picture below of grave in side of hill - from early 1800s.)

President Garfield is buried at this cemetery...well, not really buried...he is the only past President whose casket you can see. Perhaps this will help you one day in Trivial Pursuit.

View from the Garfield memorial rooftop:

Garfield's casket:

Eliot Ness is buried there as well. And one of the Rockefellers.

Deep thoughts by Matt

Matt, here. It is Sunday, July 12th. I think they will be discharging me later today, but most likely tomorrow. I am doing well, as far as someone who has had major surgery goes. Feeling a little better each day. I have to remind myself often that healing from something like this is not quick. When I am feeling my best, my mind starts thinking, "cool, we're good. all better. move on to healthy Matt." But it isn't that fast, even though I am doing well and I am a strong and healthy person. So then, when I don't feel quite as good as 2-3 hours before, my mind says, "great, I am still not well, this stinks". So, I have to remind myself not to get too high and not to get too low. Just a little insight to the mental side of all of this.



I am ready to come home and see Will and Rosemary. I miss them terribly, even though it has only been 1 week since I saw them. I also miss home in general. The plain old, run of the mill, boring, HOME. In going through things like this, maybe this is similar with other people, one of the many things I have experienced is alot of time to reflect on the small things in life. Many times I think, man, my life is boring, I wish I was doing something bigger and more important....blah, blah, blah. But, this has allowed me to realize the little things in life are likely as important, or more so, than the big things. Little thoughts, like, crawfish...they sure are good. Having a weekend day just to hang at the house and work in the yard and watch my kids play. Sitting down by my lake, watching Will and his friend fish and talking to a friend of mine. Sitting at my kitchen table and seeing Kelly pull up the driveway in the van and thinking I am glad she is home. Running into a friend at the grocery store and exchanging small talk for 5 minutes. Getting emotional watching a movie. Standing in the middle of a small, clear running creek in the middle of no-where Mississippi and looking up over the bank through the leaves and understory of the forest, and thinking about how beautiful it is and I get paid to do this. Sitting in a deer stand right as the sun is coming up, looking into the quiet, still of the woods and not thinking about much of anything, just listening to the wind blow and the dew thaw out from the sun. Having dinner with friends and laughing at silly stories that most others would think are not funny at all, but are hilarious with us because of what we have shared in becoming and being friends. Riding my bike on the Natchez trace in the summer, looking down at the striped line on the side of the road watching it whiz by, having sweat drip off the front of my helmet and feeling the sting in my leg muscles and the burn in my lungs from the exercise. Sitting on the porch with Kelly at night and just chit chatting with the love of my life. Pulling up into my driveway and Will and Rosie come running out with smiles and yelling "Daaaaaaaaaaadddeeeeeeeeeee's home!" wanting me to hurry up and open my door so they can grab me and hug me. Sitting across a table at a restaurant with Kelly and her looking at me with unconditional love and then her saying, "don't talk with your mouth full".



All these small, simple, day to day things that seem boring and meaningless, when in actuality, they have enormous meaning for me. I imagine everyone has their own personal, boring, meaningless, non-important things that happen every day. These are some of the biggest things I miss. I wish I could bottle up the understanding I have right now of how HUGE and important these things are to me, and save this for when I am feeling small and non-important. These things, and these people are what life is most about. I take these things, and these people for granted, as I am sure those people of which I am part of their small and meaningless things do the same. I love these things, and these people, much more than BIG, meaningful things that I think or wish my life was all about. Funny how I spend some of my time during these small moments thinking about how I wish I were doing something special or important, or different, when I see now that if given the choice, no question, I would be doing exactly what I was doing right then.......living life with the people I love.

Ok, no more deep thoughts with Matt. Sorry about that. Going through something like this and being in a hospital with tons of time will do that to a person.

Once again, I can't thank all of my friends and family enough for all of the support, prayer, kind words and deeds, and outpouring of love that has been shown to me. I hope I can show half of that to those people in my life who need it for them during stressful and difficult times.

Especially, I can't come close to expressing how grateful I am for Kelly. It is impossible to imagine going through this without her. She has made this experience so much easier on me. Only I will ever know how special and how much she has done for me. That is love. That is truly love. I can easily think of many reasons why I don't deserve that, but that would be another reason, selfishness. Its not about why, it is about people that love each other doing what they do because of that love.

Next time I will spare the deep stuff and stick with my "top 5 lists". Can't wait to see all my friends and family when I come home.

where we are

The new part of the building that we are in. The Miller pavillion is in this building...they have a large art collection on display & I thought I'd show you a few of my favorites.

View from the rooftop:





close:

closer:
closest:

Cristen - you would love these photographs:

parental supervision required

Ok first up, Matt update: He's doing well, better every day. We walked the hall here on Floor 5 several times today. He's all tuckered out now & is trying to sleep. The pain issues are improving. They took him off the constant Dilaudid yesterday afternoon (I didn't know about this until today). Managing w/o that baseline was a worry for me, but it's been okay. He has had to request the 'extra' IV dose maybe twice today...and while we wait for the nurses to bring that, he is able to push the PCA pump button to get smaller doses.

Next up, what you've all (Cristen) been waiting for....the stoma photo:

Okay, you are being warned. It is rapidly approaching. Turn away now if you want to....














Here goes....

















Introducing: Charlie (the stoma, not the nurse. Her name is Barbara).

I'm not sure how the name came out...it just happened. Many many apologies if your name happens to be Charlie, it's nothing personal. And we're not calling you a small intestine, but you know, if the bag fits.

HA HA HA STOMA HUMOR!

Oh yeah, one more thing - I TOUCHED A SMALL INTESTINE TODAY AND DIDN'T FAINT OR VOMIT!!!!!

Thanks again guys...Y'all are the best.

Cleveland Rocks!

Well, kind of. I mean, it's okay, I guess.


Our hotel is on the south side of the edge of downtown Cleveland. Yesterday I ran from the hotel north to the lake (Lake Erie). It's about a mile, maybe less. The weather was very nice...warm but not humid. It was disappointing that Cleveland hasn't developed more park areas/restaurants along the lake, but I think I may know why. The water coming off the lake was COLD. Even in high 80's low 90's July weather. I took some photos with my phone. The stadium you see is Brown's stadium. The modern looking building to the left of the stadium, with the propeller thing, is the Rock & Roll Hall of Fame. Downtown Cleveland is pretty much like any other mid-size city, I like it...but outside of downtown, I haven't seen much that seems nice (other than the Clinic campus).


This photo I took with the panoramic effect - I think it would work if there had been less wind & not so bright - I couldn't see the screen very well. You can see the propeller / windmill thing in this photo. It is above the R&R Hall of Fame building.

Self-portrait. I didn't get many whistles on that run. Hmmm, I wonder why? I'm looking AWESOME!Matt & I are hanging out at the hospital today. Duh. Anyway, we just went through all the photos of Will - he's at camp this week. Check this one out.

It's me, Matt

Thank you to everyone for all your concern, support and thoughts/prayers. It is actually very overwhelming. Anyway, Day 2 post surgery and I am able to write! Mind is not very clear, so I won't actually write much, just will say that I am (fingers crossed) on my way to recovery.

thursday, july 9

I have no clever title for today's post. I'm tired. Not horribly tired, just a little brain-not-functioning-at-full-capacity tired.
Today is my birthday & as of 9:30 am at least 3 people looked at me & said, "are you okay?" I assumed 40 would be like this, but 39? (Hey, today is also my Aunt Clara's birthday - so if you see her, tell her "Happy Birthday"....I'm guessing about her age & will probably be in BIG trouble for this, but I think she's 84 today. And she's on Facebook. How cool is that?)
I stayed at the hospital last night with Matt. The nurse assistant found me a real fold out mattress. SWEET! We had an okay night - some normal hospital stuff I guess (NOISE) - and a moderate pain wake up call about 2am, but otherwise uneventful.
Oh - a few folks have asked how they might send us a card...please send to me c/o the Hilton Garden Inn, 1100 Carnegie Ave, Cleveland, OH, 44115-2804. Our room number is 208, but that's probably not necessary.
Also, we both have our cell phones with us, but are limited in our roaming minutes. In an effort to keep our costs down, I'll let you guys that are just DYING to talk to Matt know the direct hospital number when he feels like talking. I'm sure you are all having phone withdrawals. (Hop....Stuart.....I'm talking to you. :) )

Here's a photo of Matt's 2nd walk-about yesterday. I was at the hotel showering when he first ventured out of bed (so no photos). The nursing asst helping him told him that he walked further than most people do their first day out of bed....so that seemed encouraging. I think he's still trying to make up for exaggerating about the marathon.

Matt has been having a little low-grade fever since the surgery. This is most likely due to his lungs not working at full capacity right now. In surgery, when hooked up to the respirator, the lungs are in a collapsed state. Using the gadget in the photo below, he pulls air into his lungs & tries to keep the little yellow ball-thingy up in the smiley-face square for as long as possible. I swear they called the gadget a barometer...which kind of makes sense...because I suppose it's measuring pressure...sort of. Right?

Anyway, all of this is going to help his lungs get back to normal & reduce his fever.

Later y'all.

don't try this at home

hey look at me! i'm posting from my phone! it has only taken me four days to figure it out. matt is still having a hard time with pain management but we're getting there. he did get up and walk a little earlier.
i took a photo of the stoma, let's vote...should i post it??

Hey guys, this is going to be short because I am very very tired.
Matt's surgery went well, they removed his colon & created the end-ileostomy, just as expected. Also as expected (expected but feared), they had a hard time getting his post-surgery pain under control at first. Matt has been on a lot of percoset (sp?) and other narcotics for some time. In cases like this, a person's body develops a tolerance to the drugs, and it requires higher & higher dosages for relief. The doctors finally did a block in the region that was so painful. He's in a room now & sleeping (when I left him). He has a pump of some type of meds, but it's hard to hit the little button when you're sleeping...so every time he would wake up, he would be in a lot of pain.
Hopefully tomorrow will be the beginning of the long road to recovery! Thanks everyone for your thoughts, prayers, texts, calls, etc.
Kelly

3 hours, 2 doctors, 5 nurses, and 3 tattoos

I am BLOWN AWAY by this place. I can honestly say I've never had such a positive experience with any medical facility in my life.

We showed up about an hour early to our first appointment - meet the surgeon, Dr. Remzi. We checked in & I assumed we'd have to wait until our scheduled time. After only about 10 minutes, his nurse, Vicki, called us back to a room. She didn't leave us & say, "I'll be back later" or "the doctor will be with you shortly." She sat right down & got to work....blood pressure, temp, long dissertation by Matt of his history, etc. She was very sympathetic to the amount of pain he is in. (During our meeting with Dr. Remzi, he twice referred to her as his 'right hand'...they've worked together for 8 years.)

When she was finished, Vicki paged the stoma nurse. Turns out, we have two stoma nurses. They spent probably 15 minutes 'sizing up' Matt's abdomen & discussing where to put the stoma. (The stoma is the part of his small intestine that will be 'pulled out.' This is where the ileostomy bag will connect.) They were great, but with the two of them working together, it was kind of like the chipmunk cartoons, "no no, you first, I insist." "No no YOU first..." When it was finally decided, they tattooed 3 teeny tiny dots on him. It was agreed that once his tummy was shaved in the morning, these would be very easy to spot. With the hair, not so much. They left & it was maybe 5 minutes before Dr. Remzi came in.

When Dr. Remzi came in, he shook both our hands, then sat down, looked at Matt & said, "You are suffering, yes?" Remzi is Turkish and very young to be head of the Colorectal Surgery Department. (He's 43 - we asked.) In talking for a few minutes before getting to the nitty-gritty surgery talk, we found out that he wanted to go to the VA in Jackson years ago but had a visa problem & the government wouldn't allow him to work there. Something like that. How sad for Jackson! He explained everything to us in great detail. Made sure we understood the surgery, why there are 3 surgeries required for patients like Matt, etc. Then he recommended that Matt have the surgery. It was lovely for him to pretend that we needed to hear all that, but we were like, "Yeah. That's why we're here. Rip it out."

He will be removing Matt's entire colon, leaving the rectum, and forming the ileostomy with the "end" of the small intestine. This is called an 'end ileostomy' and if you have to have an ileostomy, apparently this is the type you want. While the surgery will of course be painful, this should give Matt almost immediate relief from the colitis & related issues. I asked about the inflammation in his rectum, and Remzi said, without the colon - and nothing will be passing through the rectum - the inflammation will 'dry up'. So this is good news.

The bad news - kind of - is that he is leaning toward a diagnosis of Crohn's disease, not ulcerative colitis. This means that if Matt does come back for the j-pouch surgeries (removal of the rectum, reconnection off the small intestine to anus, closure of the ileostomy), he may have a recurrence of the disease. It can spread to the small intestine. If this happened, and it was not controllable with meds, he would need to have the ileostomy procedure done again. I am personally thinking we can deal with the ileostomy bag forever if we need to. No biggie.

Before he left, he dictated a letter to Matt's GI in Jackson, essentially reciting a short history as he understood it, he "does recommend surgery...not a sure candidate for j-pouch surgery...many thanks for allowing me to take part in Matt's care." Maybe this is just what doctors do, but I thought it was lovely & very professional.

The last thing we heard from Dr. Remzi was no bowel prep. Did you hear me? NO BOWEL PREP. I think short of someone congratulating us on winning the lottery, this was the best thing we could have heard today. We high-fived right there in the procedure room.

After all that, we went to the Internal Medicine doctor...just a quick run through to make sure Matt was surgery ready. Lungs? Good. Heart? Good. Blood work? Ewwww...not so good...probably will be getting blood tomorrow. He's very anemic. The doctor asked Matt, "When you were healthy, were you active? You could run a short distance easily?" Matt said, "Oh yeah, I could run a marathon." This was where I had to stop him, "Um, NO. You ran a HALF marathon. And I had to go get the car because you couldn't walk afterwards." Let's keep it real, no need to exaggerate here.

Downstairs to the lab, I gave the receptionist our file & we walked around the corner to the waiting area. Matt's name was called literally before we sat down. I'm not even sure how the paperwork traveled that fast. He did this part alone, so I sat & read my Watership Down. Then to the admitting interview - just insurancy stuff. Matt was in the bathroom for most of this...when he came out, I had already called the hotel shuttle & we were ready to go! Three hours, 2 doctors, 5 nurses, and 3 teeny tiny tattoos. Not too bad.

We're back in the hotel now, Matt feels like doggy-do today. He's on clear liquids, but not having to do the bowel prep is such a blessing. You have no idea how horrible that would have been for me. Oh, I mean for him. Did I say me?

Do you want to hear more about me & how lucky I am...there is a Greek grocery/deli about 200 ft from our hotel. I went there today when we got back from the hospital. I bought a chicken shawarma pita & a piece of pistachio baklava for $6.00! I had to walk down to the CVS to get Matt some broth (poor, poor baby), then I went BACK to the Greek deli for some hummus, fresh pita bread & tabouli. YUM!!!! I might be nice & share with him after the surgery. Maybe.

Funny story: Matt is addicted to Sudoku puzzles. I knew this, but I didn't realize the extent to which his addiction goes. Last night, he had a bad episode & was trying to relax afterwards by sitting in a hot tub (another blessing - our hotel has a great tub with water that comes out IMMEDIATELY hot & fills the tub quickly). I went to sit by him & he was telling me that these episodes really mess up his Sudoku times. "Wait. Are you telling me that while you are in here moaning in pain, you are working a puzzle? And TIMING YOURSELF?" He says, "Yeah, but my times really suck on the bad ones."

Note: I just finished this post and Matt is asleep...so he can't proof it for me. I may have some of the surgery details wrong, in which case, I'm SURE he will correct me later. Tomorrow is the big day. We have to be at the hospital surgery center at 5:45 am. Dr. Remzi told us the surgery normally lasts about 3 hours.

Monday morning, July 6th. It's 5am, I am ready. All others are sleeping. Today, I go meet my surgeon and nurses. I have 3 or 4 different appointments. I get my own "stoma" nurse. I should be back to hotel tonight by 6 or so. So, if all goes as.......it has been written........I will be doing the dreaded bowel prep tonight. I've done that so many times, you would think it would not be something to dread by now, but if you have done it, you know, not fun. And, to boot, I am in a flare, so an extra special, NOT FUN. Today, I am expecting my path to take one of many. Since I had an infected abscess just two days ago (may still be infected, but if so, that sure was alot of pain to go through to not have it well), and my H and H blood counts were at anemic levels on Sat, I won't be surprised if my path takes a detour. I really don't care, as long as I get moving somewhere. Thing is, it seems they would want my red blood cell count up before they cut on me. That may mean more units of blood before op. How this whole abscess thing affects everything, I have no clue. I am curious to find out. Anyway, today I see professionals, and this is good.

This blogging thing (journaling about yourself for all to see) is odd and seems narcissistic. But, it actually helps a little by giving me something to do, and I assume some people like to read all these silly details. For those who are thinking, TMI, sorry :)

Yesterday we went to see the Cleveland Indians play the Oakland A's. Cleveland lost 5-2. Cliff Lee (Meridian CC, last year's Cy Young winner) started for the Indians, and pitched well, but like most of this year he got no offense. I can notch another ballpark off my list. We had to leave in the 6th, but had a good time. For those who don’t know, I am a list maker, and it was just a matter of time before lists started making it on this blog. Top 5 ballparks that I have been to (in order, starting with my favorite):

1. Wrigley Field
2. Coors Field
3. PNC Park
4. Progressive Park (Cleveland, used to be called Jacob’s field)
5. Busch Stadium

I got many more lists in me and will post later.

I have no idea what the doc will say today, but will post when I find out. Here are some pics from the game:

Kelly and Mom after we first sat down. Our seats were in the sun, and it was BRIGHT and HOT, so we quickly moved back a few rows in the shade to some empty seats.

Foul ball pop fly to right field, Jonny Peralta

Grady Sizemore after a 1-run double in the 5th

Cliff Lee. Very nice mechanics!