Doing well

Greetings! Guess it has been awhile, will try to update all that has happened since my last post.

Once Peter got back on the prednisone everything started looking up. He could eat, although he really didn't want to, and he could keep the food down. We saw Dr. Horwitz on the 20th and he was quite distressed about this recent setback. Peter has lost between 10-15 pounds since he was discharged from the ABMT clinic the end of last month. Dr. H upped the prednisone and added another steroid that works specifically to coat the stomach and intestines. Since starting this new regimen Peter is much better. He actually got up this morning early because he was hungry!!!! He is still not eating alot but at least he is getting in 3 small meals per day, some snacks and all his meds.

Before we left the dr.s office I told him that we were not at all satisfied with the way this last episode was handled. He said he understood my concerns, and stressed that they are very hesistant to put patients back on steroids once they are off of them. I told him I felt that his lack of eating, weight loss and vomiting should have outweighed those concerns. Their statement that they wanted the test results back was a load of crap - they still had no results as of last Wed. Would they have let Peter stay the way he was withouth Prednisone until the results came back - maybe another 2-3 days? No response. I would hate to have seen the shape he would have been in if they had waited.

Now that he is eating and taking his meds, his spirits are greatly improved. We are starting back to walking for 1/2 hour periods and he is taking an interest in what needs to be done here and even starting to keep an eye on what is going on at work even though he won't be back there until mid-April at the earliest.

The golf course behind us is under construction - a huge remodel. Some days it is so noisy I could scream. The equipment makes the whole house shudder! Luckily they are working further away from us today but I am sure they will be back.

Until next time, have a great day!

Wendy

Clarification & Update

First of all, let me clarify - Peter was not admitted back into Duke hospital - I'm sorry if I wasn't specific enough in my postings. He was recalled to the Adult Bone Marrow Transplant (ABMT) clinic which is the clinic we have been going to at Duke since he was discharged from the hospital.

Now that that is clear, I hope, we are back in Wilmington. We went to the clinic yesterday, they drew blood and said all looked good, so we could leave and come back again the next day (Sunday). They were not planning on making any changes in meds until after the biopsy results came back on Tues. or Wed. After thinking about it for a moment, I went and spoke to the nurse practicioner and reminded her that Peter had not kept food down for a week nor had he taken his meds since Wed. and didn't they want to do something about this? I reminded them that the problem started just 2-3 days after the prednisone was discontinued and asked if maybe he should be put back on it. She said she would talk to the dr. about it and let us know, so I said that I was thinking of putting him back on the prednisone anyway to see if that helped. That got her attention and she spoke to the attending physician who agreed to start back on the prednisone. Peter took it yesterday and today and he thinks he is feeling better! Hooray!

We go back to the ABMT clinic on Wed. Hopefully they will have test results back and will have a plan ready.

Wendy

Quick update

Just a quick note - colonoscopy looked fine. They took some biopsies just to see if there was anything on a microscopic level. Gave him a GVHD diet to follow which is very similiar to what I should be following for my diverticulitis - they are going to get us both healthy one way or another! He's gonna try eating today and see what happens. We go back to the clinic again tomorrow and then see what happens from there.

Wendy

A small step backward

Well, we are back in Durham at the ABMT clinic. We came back yesterday morning hoping to only stay for a day or two but now it looks like we will be here for a week or so.

Peter started having troubles Sunday afternoon, nausea and vomiting with anything he ate. This continued and we called the clinic Tuesday afternoon. They scheduled us for an appt. here at the clinic. The current thinking is that he has graft versus host disease (GVHD)of the stomach/intestinal tract. This problem started 2-3 days after his last dose of prednisone, so the prednisone was probably just keeping the GVHD under control. He has been getting some IV meds plus fluids today and we have a skin biopsy later to look for GVHD of the skin. He has a colonoscopy tomorrow with biopsies planned. They plan to run some further tests next week so that they are sure of what he has and how they want to treat it. Hopefully they will just have to put him back on steroids.

We stayed at the Millenium Hotel last night and will be there again tonight. Then we move to Homewood Suites (not Homestead where we stayed before). We already had an appt. set for next Wed. so hopefully when we see Dr. Horwitz then he can send us back home.

Again we are indebted to Heather. We dropped Annie off at her house yesterday and she settled in quite nicely. She'll stay there until we head back to Wilmington.

We are confident that this is just a small step backward, and look forward to returning home.

Wendy

Day 100+ I've lost count

Still plodding along here. Nothing exciting going on. We went to the dr. here in Wilmington last Thursday and he was very impressed with how well Peter is doing. His numbers are great - ahead of where they were expected to be. We were both pleased to hear this.

We've both used the treadmill exactly once. The weather has been so nice here lately that we go over the Carolina Beach and walk the lake with the dog. All three of us need the exercise. It is .67 miles and right now we have worked up to twice around with a rest in between. We won't break any speed records but at least we are all up and moving.

Eating/taking meds is becoming an issue. Peter's appetite is practically non-existent, so he's not eating enough to keep a bird alive. Since his stomach is empty alot, he gets nauseaus when he takes his meds, so then he's not wanting to eat and so it goes - a vicious circle. I went grocery shopping today at Walmart (I think every senior citizen in New Hanover county was there) and bought lots of high calorie/protein snack food in hopes this will get him eating again.

The most excitement we get is watching all the heavy equipment moving dirt on the golf course in back of us. There are dump trucks, and bulldozers and a steam shovel. I hope they have a plan, but it sure doesn't seem like it. Right now everything in the house is vibrating - they are right behind us!

Nothing else is new here. Cards of encouragement and emails/phone calls would be appreciated.

Wendy

Day + 97 Wilmington

No, we have not fallen off the face of the earth - we've just been sorta hanging out here in Wilmington.

We left Durham last Wed. Even though we had made 2 trips home before, the car was stuffed - Peter rode with Annie in his lap! It has taken a week, but the house finally does not look like we just arrived home; all we need to do is put away the large suitcase.

Life is proceeding. I posted stuff on Craigslist and we spent the weekend helping people put our stuff into their cars. We had the treadmill we bought delivered and it took 3 people to get it up the stairs - weighs over 300 pounds. Finally got it put together and in place today and it sure is nice; so quiet you can't tell that it is running. It has a built in heart rate monitor so if we can figure out how to program that, will get started with some training.

Peter seems to be having bigger swings in how he feels. Some days he is great and full of energy and then the next day or two he feels awful and gets very discouraged. He's had alot of nausea and is not eating much which causes the meds he takes to really irritate his stomach which causes nausea. Kinda a vicious circle. I nag him as much as possible to eat, but sometimes it's like hitting the old brick wall.

We go to the oncologist here tomorrow. Hopefully he has not lost any weight, and all his numbers will be continuing to improve. Dr. Horwitz (Duke) called on Tuesday and said that the results from the bone marrow biopsy from last week were excellent! His said his immune system continues to be improving on a faster pace than usual. Still have to watch out for "bugs" of all types - the immune system is doing good but not that good.

I am very disappointed with Travelocity.com. Peter's mother and sister are coming next month to visit. I was online searching for flights and found a great one. By the time I had searched for the next flights they would need and went back to book the flight the price had doubled+. It is aggravating that they will tell you that there are only 3 seats left, but not that the fares will change in 5 minutes. AND there is no where to send them an email to complain.

Anyway, it will be nice to see his mom and sister. They'll be here from Sat. to Thursday. We may have a visit to Duke and take them along with us.

Not much else going on here. Hope you all are having a great day!

Wendy