"Intestinal Track 101"

To be very frank, we know a lot more big words to describe what could possibly be happening in his intestines, and what are the possible ways of treating it, but they still don't seem to know the location or cause of the problem - in him - this week!!! They don't have a game plan. Part of this is because with bowel blockage type problems, some of it is a wait and see game. So even if today were a day in the middle of the week, instead of a weekend, we would probably be in the same place. However, it is a weekend, and all of the faces we met on Friday have someone covering for them over the weekend, we have had a lot of faces that try to grasp the case history (can you imagine telling that story 5 times in 2 days.?...) as well as each of them try to communicate their suspicions, thoughts, theories, (blah, blah blah....)..... Dave is medically improving, emotionally slipping. This kind of blind sided him and when Doctors do this "intestines 101" type stuff it gets frustrating and depressing. He just wants to come home. His stomach no longer hurts. But the tube (NG) is still attached and is causing a lot of irritation in the sinuses. We did get him walking a bit today (no, I was NOT going to tell him - that I told the nurse - to get him to do it). They have added a new team member - a gastroenterologist - because he has some white blood cells in one of his lab workups that may indicate "Pouch-itis" - an infection in the reconstructed J-pouch. All of this may or may not be caused by an obstruction at all; it might instead be a "closed loop bowel obstruction" (take the garden hose and twist it until no water gets through) (which is apparently not the same thing as an "obstruction" which means "something blocking it"[shove something into the hose until it stops the flow]). It could also be some inflamation, maybe from an infection..????. but they are not sure. They don't know where the source of the problem is, what exactly is the source, ... nor do they know if they are going to just "let it work itself out" or if they are going to operate. Oh, and the gastro guy is going to do a "flexiblesignoidoscopy" (a mini colon-oscopy - smaller proceedure but with a longer name) on Sunday at 9 am. At least they are knocking him out for it!!! In the mean time, my phone has been acting like crud. It is causing problems being so un=reliable. I am going to try to pop out and get a new one at some point. Thanks for reading, I will sign off now before I really get rambling - like a weekend doctor......

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They dont seem so into making patients walk the halls here. Poor Dave.... He is being made to walk anyway. He wont listen to me so i made it clear to his nurse that i know walking is vital (thanks to our care at "the mecca"/MGH) and she needs to tell him. I will make him walk again - for a longer spell - before i leave in two hours. Still no sign of the surgeon. Hope she arrives before i have to go.

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My phone is acting up. This morning it was clear. Then mid morning it said i had 5 voice mails. They were all calls from yesterday. So if your trying to reach me thats yer problem. Im with Dave in his room. He is feeling good enough to be watching a john wayne movie... Which is a huge improvement! He is still in a stage of - not much news. Nothing more can be done at this time - still need to wait n see. After the movie is over he is going to walk the halls for a bit. Liam is at the neighbors until noon. Then from 12 to 6 he is going with another friend . They have a son that is playing in a basketball game so that will be fun. He knows he is being pawned off but i am making sure he gets his evenings with me.

What a day... was that just one day?!

Okay, so a bowel obstruction is like a clogged pipe. It hurts and its gross what happens as a result as your body tries to manage. They have him on a stomach suction and it is a wait and see situation. (He told the Doctor that the tube "really sucks" but the guy didn't laugh! ) He is on meds for pain, nausea, and also IV fluids. We talked to Dr. Shellito out in Boston, he said that if surgery should become necessary that any general surgeon is fine - whew - talk about taking the pressure off. We met the surgeon, we liked him, he works in a team that are colon-rectal specialists and he does do that type of work, but he is not certified as specialized. They don't want to do surgery. An obstruction is caused by scar tissue that forms (like from his major surgery in Sept 2007) - think of it like super-glue that accidentally glues your fingers together! The scar tissue gets things sticking and stuck in a way that can... obstruct flow of waste. One reason to not want to do the surgery to try to correct it - is that it also can cause more scar tissue. Vicious cycle! They were also going to do a scan this afternoon that would involve some contrast (Bar. Eni.) so they can maybe get a better look at what is going on. The other advantage is the contrast will help clean out the clog's other end... once the pressure is off from both ends it has a chance to just set itself right. I spent the day getting referrals, getting a new power of attourney in place, cancelling my participation in the life guarding class I was in (side note: this is the second time that Dave's health has caused me NOT to be come a life guard! One of these days.... ), contacting family and co-ordinating care for Liam. We have plenty of help. Lots of people can take Liam for lots of hours. I am getting him home at 6:30 and we are going to do some normal bed time routine stuff and talk. Not sure if I am going to take him to see Dave in the morning or not. Maybe wait until the afternoon. I finally have a bit of sleep and will see about eating again then go to bed at the same time as Liam. Thank you to everyone for your support and understanding. I will keep the blog posted. If you are on Facebook it also directly uplinks to the "notes" section every few hours. Feel free to pass on the word to all you know that know us, and care about us, as much as you.

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Someone out there has a voo doo doll with a whole lot of pins in it. If anyone comes across this person please firmly let them know they have the wrong guy.

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Yup. Its a bowel obstruction. They are getting him a room. A suction will take pressure off the stomach. They are also sending a surgeon in to talk about ...? Maybe removing scar tissue that is causing the problem.

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Okay... For those that check the blog still... Here is a saga for you! On friday Dave had vomiting. There has been a bug going around the office so we just let it pass. Tonight it came back in force. We decided to wait until morning and call the local general doc. . Well that plan changed! At about midnight i started to call around to see who i could wake up to care for Liam. Eventually woke up the house next door. Her husband is a fireman and is away on duty tonight. So i wrapped Liam up and took him to her house. We got lucky at the ER. Nobody was here, we got taken right in. Im glad we are here. They gave him morphine for pain, has an IV, Meds for nausea, and have drawn blood. All within 20 minutes of walking in the door! They have ordered CAT scans. Maybe this is a bowel obstruction? The scar tissue from the surgery can grow and cause that. More info later.

all clear

For the first time, the scan results had no new mystery spots. Nothing growing. Blood work is great. Scans clear. All is good! Whew!

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Monday dec 8 scans in boston. Nervous. Prior two sets of scans came with complementary scares that turned out to be nothing.

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Monday dec 8 scans in boston. Nervous. Prior two sets of scans came with complementary scares that turned out to be nothing.

December scans for Dave

Dave has scans on Monday December 8th in Boston. Then he and Kerri will meet with the Dr. on Wednesday Dec 10th for the results. The last two sets of scans showed spots that eventually turned out to be nothing. I guess I am braced for that this time around. Its not to say I won't be frightened, but braced for it. Its like that really fast huge roller coaster at 6 flags or whatever, you just know there are some parts you will want to scream from fear, but at least you are braced for it. The big difference is we HAVE TO go on the scary roller coaster .... its not a choice. Someone asked if Dave was considered to be in remission. I had his assistant on the phone one day and remembered to ask about that. Evidently, Dave's Dr. does not use that term. At 5 years out, you are just cured. Until then, I guess you are still a patient.

Good News

The blood work indicates that there is nothing to worry about. Scans will be done again, in Boston, in December. Happy Halloween!

A typical day - the new version

One day last week this is how Dave's day went: 5:30 am biked 1.5 miles to work Lifted weights for half hour at the office gym Worked a full work day Biked home Had dinner then was out the door for Fencing Club. How else can I say this?.... He's back! He is ... just.. MORE! More happy, more energy, .... It is so nice to have him back!

ALL IS WELL

I don't have too much to say - which is such a relief! Dave bikes to work (1.5 miles) every day, is sleeping a bit better, and we are having a great time. So, here are some recent photos for you to enjoy, thanks for checking in. The next scans are going to be done late December.

Settling In

We are settling in! My folks were here for the first week to get the necessary stuff out of the way. Still have to put books on bookshelves, hang pictures, and hang curtains. Still some nooks to unpack. And some piles of random things still looking for a place to call home. But the home is functional and comfortable. We bought a new couch to replace the white one I put out to the curb a year ago. We love the community we live in. We are only 1.5 miles from his work. We bike all over. Festivals are every where and every weekend. Live music is everywhere. You can't swing a dead cat without hitting a park with a playground. So far we love it. I might have a different answer in February due to the seasons. Here is a photo of our home. (technical difficulties that I hope to later clear up prevented me from adding that photo at this time) It was at one point a small one story Bungalow. The woman was widowed with one son. She raised him here. He got married and added a second floor making it a duplex. (lots of duplexes here). Then as his family grew he converted it back into a one family home. On the first floor is a kitchen, eating room, living room one bedroom (that is our spare room that we call "the grammy bedroom"), and one full bath. The basement has a finished room at the bottom of the stairs, then the unfinished laundry area with boiler, a semi-finished area we are using for storage, and then "the man cave" finished office. On the top floor is our bedroom with a huge closet, a room for Liam's toy and play area, Liam's room, and an area I have claimed as my office. So plenty of space to stretch out in. The trick will be not to fill it in the 3 years we expect to be here! Okay, gotta run!

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Just took the duck tour of boston this morning. Boston is 40 square miles in area. Within that 40 square are 103 dunkin donut shops. Thought you might like that trivia. Scan results were good. The next set of scans are in 6 months - right around christmas. We might all fly home for it. Visit family. We just left the hospital in boston. On our way to milwaukee. Hope to make buffalo for tonight. The moving truck delivers our stuff july 2nd. My folks will be there to help out and see our new home. If you dont have our new home address yet just drop me an email. I will shoot it out to ya. Not putting that sort of stuff on a blog. dkgodfrey@gmail.com . We are doing great and looking forward to the new adventure. Might still have time to get veggies planted in the garden. Liam will start an all day every day public pre-k at the school that is 3 blocks away. Thanks for checking in. Call anytime!

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I wont post our new address on the blog. But if you email me, I will send it to you.

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The moving truck is being loaded. They have been here for 12 hours. (9pm now) They are good guys... We just needed more of them. We will be back tomorrow to finish cleaning. I work the graveyard shift that ends at 8am sunday. Then we make our way out to Cape Cod for a week. Dave has a scan of the liver on the 23rd. Results on the 25th. Then we ride the gas pedal to Milwaukee. Dave works Friday and Monday. We hope the movers will be available to deliver on July 1. That cant be sorted out until the stuff arrives out there. All in all we are excited and happy with the move, new house, and new city, new job...

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We looked at 12 rental houses. But there was only one that felt like home.

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As we drove from salisbury to boston, we finally were able to get ahold of someone that could clear things up. . . The port reversal is thursday. Dave and I have not agreed on any time lines after that. I know when the movers are arriving and the rest will just work itself out. Ha! Maybe!

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Dave decided to come off the neuropathy Meds last sunday. That was a failed experiment. His pain and discomfort came roaring back. He is having outpatient surgery either tuesday am or thursday am. To have his port removed. Communication mix up - so we dont know for sure. We still have to find a place to rent in milwaukee and the moving truck is due soon.

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Sigh of relief. Probably benign. Another MRI in 6 weeks.

Part one of today is done

Dave is out of the Colonoscopy. It went well. The Dr is a man of few words (He is one of the top Colo-Rectal surgeons in the world - I don't care if he has a bed-side manner or not) but he said he did a biopsy of the connective tissue just to run some tests. Not that it looked like it needed it. So, all good news there. one down, one to go.

photos from our trip

While I am still thinking of it, let me attach a few photos from our trip. A Disney Cruise is something everyone should do. It was awesome. And it was so nice to have a break from reality...

I had a bad case of stomach ache and spent most of the day in bed or in the bathroom. 9 days of traveling taking its toll? Or a case of the worst nervous stomach ever? I am rested and ready for tomorrow. I have had a few tears. But doing okay. Dave is holding up amazingly well. We are in a better place than we were at this time last year. And I think we are both ready to hear that surgery is needed - mentally prepared so there is no shock. At the moment, possibly purely speculation: I think we would hang tight to the area until after the surgery, then after the recovery, still probably move to Milwaukee. Whatever is floating around to cause the spot to grow, they can go in and cut it out, but we may see this again. cutting it out would take care of that one. But there is nothing to do at this point to stop others. Like "Mad Eye Moody" in Harry Potter, would say "CONSTANT VIGILANCE!" and that may end up being our motto! Trivia Question in my mind: what do you call a Dr that specializes in Livers? Check the blog Friday afternoon. It will maybe be a one-liner but we should know one way or the other.

Dave is amazing

Dave is doing really well. He has an amazing outlook, sense of humor, and inner peace that just seems never ending. We are grateful for amazing friends and family. He is also on Cymbalta for his Neuropathy, and that is also prescribed to some patients as an "anti-depressant" so I am sure that is helping. They did an MRI on Tuesday afternoon (within hours of us getting the news that it was needed) and then they did a PET scan Wednesday morning. We are home now for a change of luggage, laundry, post office, bills - type "Quick Turn." Thursday we pack again and head to his parent's place. They will be watching Liam while we have a full line up on Friday at the Hospital. He is still having his "one year from diagnosis" colonoscopy on Friday at 7:30am. Then we meet with the Oncologist at noon-ish to hear more about this liver spot. The kick in the pants about all of this, is that we are ready to move again, and again we don't know if it will happen. The difference being that this time I won't let a moving truck come until I am DARN sure we are going to Milwaukee. On Monday he goes to a place in VA for training for his Milwaukee job. Someone said to me "Don't put the cart before the horse" and trust me I am not trying to. But it feels like "the horse got stung by a bee, ran off out of sight, and the cart is very slowly rolling downhill and I can't tell if there is a cliff in its path." And there is just nothing I can do about any of it. It is a moment of shock and dismay that occurs as you can just see the last of the horse, and the cart is beginning to make noise as you realize it is moving. Its just time to hold onto your hat and wait. And yes, we are praying. We are not waiting alone! I will post a brief message from my phone again on Friday afternoon.

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The trip was great. We got in after midnight. We met w the dr today to go over CAT scan results. Blood work looks good. The spot that popped up in january, on the lung, did not show up this time. So far so good right?! Yeah. Right! Ha! There is a spot on his liver. One centimeter. More scans today and tomorrow. Meet the dr friday to discuss results. If it is cancer the only thing they can do is go in and cut it out. It is MAJOR operation. We are staying at his folks tonight. Back to taking things one day at a time. Sometimes just trying to get from one exhale to the next inhale. Not in the mood for a pep talk right now.

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Land ho! What a magical 4 days on the ship! Today we go to a hotel. Sad to leave the ship but at least we dont have to rush home.

Just some photos

A good friend grabbed these shots and emailed them to me. Liam has grown a half an inch since February! Enjoy. I will get some that have Dave and I soon too.

And now... a cold? allergies?

Dave will be close by the house this weekend. You should give him a call. His voice sounds like an old man, in a nursing home, on oxygen. For now he is able to breathe fine, it just sounds bad!!! He thinks it might be allergies. The Doctor can't see him until Monday but is not taking any chances - has already put him on a Z-pack antibiotic. As you probably know, Dave gets a cold or allergies, but then ends up with Bronchitis. So, he will see the Dr. on Monday.