Multimedia message

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!

Multimedia message

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.

Multimedia message

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.

Multimedia message

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.

Multimedia message

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.

Today and the next few months

Things are bumping along okay. Dave has Neuropathy. It is painful and constant. It is a numbing tingly feeling in the bottom of this feet, all of his toes, and the pads of his fingers. It is odd that it did not come on strong until March. The medications have not been working. He is on a new medication which is proving to be just as ineffective. Although the medications for Neuropathy are also the same as for anti-depression so he can be a very happy - at times- person in pain. Dave is getting weekly massages. Right now for a half hour but it will increase. And we are thinking of looking into Acupuncture in Milwaukee. Probably for both of us. There is a spot in his lung. They are telling us not to worry. But... how can you not? It is super small and they are going to do CAT scans every 3 months instead of every 6 months to monitor it. His next scan is April 25th. Dave and I have decided that he will fly to Boston for appointments for awhile. Maybe for the next year. One April 27th we are flying to FL for a Disney Cruise for 4 nights. Then we will be at a hotel in FL for 4 nights. We fly back on Monday and get the results to the CAT scan on Tuesday. Then that same week, on Friday, he has a Colonoscopy - the guy that is doing it is the same surgeon that did the surgery in Sept and Feb. The Dr. is one of the worlds best in this stuff, so Dave is in good hands. Then... Dave needs to go to Yorktown VA for 2 weeks to learn about his Milwaukee job. I am going to be in and out of town - spending some time with my folks. Then it is Memorial Day weekend. A last good bye to the Godfrey Family that is up in NH area, then we go Milwaukee for house hunting. We are going to be renting. We are trying to decide now: a) Drive to Milwaukee, house hunt, come back, have the movers come and take our stuff and have it directly delivered to the new place or b) Have the movers come get our stuff then we drive out to Milwaukee while we house hunt. It sits in storage and gets handled a LOT more thus causing more wear and tear. I feel like the next 6 weeks are going to FLY by! That is all for now! Sorry if I am repeating myself! Thanks for reading.

the unexpected phase

First off, thank you Staier, Weems, and Pruitt for fulfilling my request this weekend. I think my mother-in-law said it best: "We just thought it would all be okay and over by now." The Neuropathy is bad, I think it is getting better, but Dave does not see the difference yet. The constant "re-adjusting" of his system is harder than we ever thought it would be. I said to him this weekend, "I feel like we are just where we were last year at this time!!" and he said "what do you mean?" So I explained, "Last April you felt too lousy to do anything, and were always in the bathroom! What has changed?!" He did not go to work on Friday the 28th. So basically from Thursday night until Monday afternoon, he was in bed, on the couch, or in the bathroom! I try to get Liam out and do stuff with him - so that Liam is not missing out because someone is sick, and also to get Liam out of Dave's hair so he can rest. Disney Cruise is coming April 27th. I wonder if Dave will be able to enjoy any of it?

Too yucky to go to work

Dave did not feel good enough to go to work today. Here is a clip from him: "Well I've been on the anti-neuropathy medicine for 2+ weeks (they even doubled the dosage last week) w/ no affect. Started a new medicine yesterday - tossed & turned for over 4 hours last night, felt hot & sweaty alternating w/ cold chills - stomach feeling upset / nauseas.... on the positive side my feet and fingers are ... still numb." A call to Boston is coming... Just not sure which Dr to call. He is using the toilet... ah.. about as much as he did just before the diagnosis! So this stinks, a year passes and we are right where we were! great! Hey, this beats a blockage!

baby dose my _________ !

Okay, so the nurse practitioner that perscribed the neuropathy meds... evidentally started him out on a baby dose. Come on people!!! Anyone that has ever met Dave (this nurse has not!) would never put the 6'6" man on a baby dose of ANYTHING!!! And after a week on the drug, we call up to complain that it is still bothering him, she doubles the dosage. Still no relief!!! He is miserable! His hands and feet bother him all the time! He can't really do much! He sits on the couch with a microwaved warm pack on his feet! He is down, frustrated, annoyed,.... We are going to call this week.... and this time... I won't even talk to that nurse practitioner. I want the DOCTOR! The guy we know and trust! It bothers me to see him like this! We had expected to be past all this crud by now! arg!

Neuropathy

The type of Chemo that Dave when through lets you keep your hair, but the side affect is a possible Neuropathy. Some folks on deal with it a bit. For other's it gets very severe. It is a tingle sensation like your hand is asleep. But also a bit painful. And the same time numb. If it gets bad, it feels like you are wearing thin leather gloves (an example of how it might feel on the tips of your fingers). It comes as a sensitivity to cold. So as Dave progressed through his 8 doses of chemo, winter marched into our lives - thus increasing his exposure to cold. One time he went out to pick up the paper. A small bit of ice popped onto his hand and it hurt a LOT in that spot. The chemo got disconnected Jan 13th. The day he went for surgery, he was still dealing with some Neuropathy... on the pad of one thumb, and the bottom of his feet. It is now March 13th, and oddly enough, his neuropathy symptoms have been getting worse instead of better. Never mind going outside! His feet hurt on the kitchen floor, or standing inside the door holding the door open for Liam. He uses hot packs to try to warm them up and bring circulation down to his toes. He finally decided to call the DR. They were surprised to hear about this too. They per scribed a drug called GABAPENTIN. It does a number of things and has a number of uses. Its not like Tylenol - take as needed. It is "take daily" to let it build up in his system. We shall see if it works.

By Dave himself... even though he does not read the blog!

Hi. Dave here, just wanted to pass the latest news. Had my surgery Monday afternoon to "reconnect" the pipes. The surgery went very well and they let me go Wednesday night (was initially expecting to have to stay until Friday). I was recovering pretty well and they said I could go home Wed evening or wait until Thursday morning. I didn't see the advantage of spending another night in hospital (although Liam was disapointed he didn't get to stay in a hotel room) so I decided to go home. I'm feeling ok. The surgery site doesn't hurt too bad most of the time & the drugs are helping ("better living through chemistry..."). Went and walked for about 30 minutes at the Academy's indoor track this afternoon and was pretty sore most of the evening. They say walking helps speed recovery, but what do they really know???? Will probably be out of work for several more days at least...although K may have to hide my keys to keep me out as long as she thinks I need to recover. Still haven't gotten "regular" yet. They have me on Metamucil & Imodium to help things out - which seems strange as I thought they worked at cross purposes..... The doctor did say it would take some time. I'm starting to eat a little more - but not back to normal in that regards either. Basically that's the end of the treatment, after about 11 months of radiation, surgery, illeostomy bags and chemo. Thanks for all your thoughts, prayers and support since the diagnosis. I still have several years of follow up treatments - but hopefully the worst is over now.... Dave

Multimedia message

It feels like spring! The temperature gauge that reads 28 is certainly broken! The chemo left him tired, solom, and not fun. The chemo has worn off and the pain Meds are making up for the previously mentioned darkness.

Multimedia message

We are all home.

Multimedia message

He looks fantastic. They have him on pain injections still but will be moving him to pill form later today. He gets to eat jello and juices. They deliver chicken broth... But who eats that? They are talking about him going home tonight or in the morning. It is sort of up to him. Although i just asked him and he said the thinks that "staying here another night would be stinky"

Multimedia message

Dave is doing well. He has been up walking. He cath is out. He is sitting up in bed reading the paper. Diet wise he is so far just had sips of water. Sounds like going home thursday morning.

Multimedia message

I got to his bed side just after 730. He is tired. The docs were in. The wound is closed with steri strips. Which is awesome! We were told back in sept by a visiting nurse that it would be a gaping hole that would need to heal from the inside out. We were told it would be packed with gauze and we would need to learn how to take it out and re-pack it. Understand that she told us this when we were still gagging about the stoma care. So... It is a HUGE relief that we are NOT dealing with that. He has some gas pain. Some nausea. But nothing that is unexpectedly off the wall. Once they get the nausea and pain controlled... They will have him walking the hall ways to get his system moving. I will keep ya all posted.

Multimedia message

Oh my God! He is done! 4:42 pm and the surgery is complete! All went as planned. All is well! What a huge sigh of relief! We now wait for him to wake up and then they move him to a room. Oh.... Wow.... .... Dave had said he was just wanting this over with and was looking forward to NEXT monday.... When the worst of the recovery was behind him.

Multimedia message

Dave went in just about on time. He could only have clear fluids sunday. And nothing today. So i did not eat in front of him. The moment they wheeled him away we dashed off to eat. They have a special waiting room for families. We are there now. I teased him before they took him... Told him to wake up faster this time than he did in september. After the surgery the dr will call me. Once he wakes up they move him to a room. Then they let us see him. That is all there is to report. For now.... Check back later ok?

The plan

Liam is going to his RI grandparents Sunday. Dave checks into the Hospital at 1 pm on Monday. Monday night Liam goes home with his MA grandparents after a Boston handoff. I am staying at a place the hospital has for families of patients at a very reasonable rate.. He will be in the hospital for 2 to 3 days. But the confusing part is "how do they count?" I mean, is Monday day one? Or is it Tuesday that is day one? So I am not sure what day he will be "released." He will return directly home after he gets out.... last time we went to his folk's place for a few days. Which just complicated setting up the visiting nurses and such. I will be blogging from my cell phone so you can check back frequently for updates. Do you have my cell phone number? I will have it with me. If you don't have it, I will gladly give it to you. But I won't post it here! So email me (dkgodfrey@gmail.com) and I will give it to you. If you call at a bad time... its okay. You will just get the voice mail. Not a problem. -Kerri PS, Liam has an ear infection. Yeah. I know. Great timing eh?

involuntary quarrentine?

I am trying to convince Dave not to go to work next week. "stay home, stay healthy." So far it is not working. Maybe I will bring a huge supply of "Lysol Wipes" and "hand sanitizer" in for the entire office section if the quarrentine does not hold.

Good News - Feb 25th is the day

Okay, so we were taking it kind of hard. Not the getting sick part. Not so much that it had to be cancelled. But it was like a punch in the gut that the surgeon's assistant had mentioned trying to do the reversal in April or May. I had called her again on Tuesday and she said she still had not had a chance to look at it. They had some new patients to schedule too. I told her that I wanted a date before March 1st. She said she would get back to me... and she kind of said it like "I WILL CALL YOU, you don't need to be calling me." (and I wondered if I had made her mad... thus resulting in a possible November date) Yesturday Dave got an email that he must attend a 2 week training in Virginia in May. I called to tell her that we needed to black out those dates as not possible surgery dates. While I had her on the line she told me Dave is scheduled for February 25th. I got off the phone with her and wept with relief. I was still all choked up when I called Dave. He took it in stride.... like I had said that we would be having pizza for dinner. Oh well, at least I feel a huge sigh of relief!!

The light at the end of the tunnel has been temporarily shut off.

The light at the end of the tunnel has been temporarily shut off. Last night at 10 pm Dave starting getting diarrhea. Vomiting started at 2 am. I had the same thing last week. Some folks at Dave' office also have had it. But for Dave, because of the bag, he is at a high risk of rapid and dangerous dehydration. By 430am I was wondering who i could call at such an hour to watch Liam while i took Dave to get an IV. I decided to hold off until run rise. The preferred place to go evidentally does not open until 7 am... so it worked out fine. The ER doctors called the surgeon. The surgery is to be postponed. Cant have him operated on when he has been hit so hard. I have to call monday to try to reschedule. Will this change the cruise date? The moving date? Sigh.... ODAAT=one day at a time I picked Liam up and took him the pool for some swim time so Dave could get some quiet rest time at home. Our pool time was almost over but came to an abrupt end.... Liam got diarrhea now too! Well... AT LEAST I HAVE ALREADY HAD IT! Well, I am off to do Laundry. Its just a "high level of laundry" weekend it looks like!

Finally getting excited

Dave's surgery is Monday!!! Now I am excited. Today I made hotel reservations so we can stay near the hospital Sunday night, (he has a 5:30 am check in) and I can be near by for the days he is in the hospital. The light is on a the end of the tunnel and I can smell the fresh air!!!!

Scan results

Long Boston Day.Ended up taking Liam with us to the appointment.He is doing great by the way. The pneumonia/Brochitis is clearing up faster than it came on. The good news from Boston is that the Dr says we have nothing to worry about.The scans showed a small spot of "whatever" on the lung. Dave has had brochitis and Pneumonia so often it could be scarring from that.Or the scan caught him on an in-hale and it is a mucus bubble. Dave thought he heard the Dr say it was 5 millimeters in size.I thought he said .5 millimeters in size.I am going to work on getting a clarification on that point.All they are going to do is rescan in 3 months to compare. Thats all! Next up,Surgery to reconnect the pipes on Monday!