Another short day at the clinic, only needed magnesium and potassium. Lisa, the nurse practicioner said that if all goes well tomorrow we may get to take Sunday off!!! We can sleep in! Hopefully tomorrow he won't require much and his counts will be good.
We're now into the second day of Insulin shots. Peter did all his shots today. I only do the ones in the back of the arms. He is finding it very complicated to try and check his blood sugar, give insulin and take all the meds he has. Some must be taken on empty stomach, others with food, or without certain foods and he still has to take them slowly so they stay put.
We went to get him a new cellphone today and of course the salesperson who waited on us was sniffling and coughing all over the place. Peter had his gloves on and stood away from the guy while choosing the phone. Then he went to the other side of the store to sit while all was being done. When we got home we wiped down the new phone and the old one, and his phone holder. You know, most of us take it for granted that we may catch a cold at some point in time, but it takes on a different meaning when a cold could do you in. We are alot more careful than we used to be and are amazed at how lucky we were that Peter did not catch anything before the transplant. I guess even his ineffective immune system held him in good stead for awhile. Now we need to give his baby size immune system the chance to work.
Still thinking about the clinical trial. Leaning towards doing it. I think the potential benefits outweigh the risks, but the final decision is Peter's.
I'm done for today! Thanks for your support and prayers.
Wendy
Friday, November 30, 2007
Thursday, November 29, 2007
Day +29 Still going in the right direction.
All was good today at the clinic. Only required magnesium. We finished there around 1; it would have been sooner except for 2 things. First of all we both had to learn how to draw up insulin into a syringe and how to give the shots. That went well and I gave Peter his first shot in the arm before dinner.
The second thing is quite interesting. Peter has been asked to be in a clinical trial, actually right now he would be the clinical trial - the only participant right now. It seems that sometimes babies are born without thymus glands. Because the thymus gland is the "school" for T cells to learn how to fight infections, babies without thymus glands usually don't survive very long. It is also common that when babies are born with heart defects and require open heart surgery, they thymus gland is partially removed and discarded.
About 15 years ago a research MD wondered if parts of these glands could be transplanted into babies and if these would function as thymus glands for those babies. Of the 44 babies they have done it on, 32 have successfully converted these sections to function as the thymus glands to build up the babies immune as would happen normally.
In adults or most everyone over 15-20 years of age, the thymus glands atrophy and no longer functions. Since adults with cord blood stem cell transplants are basically newborn babies immune-wise, this trial would see if the same procedure would work in these adults. Peter has fully engrafted and since almost all his cells are from one donor, he is considered a perfect candidate.
He needs to decide by Monday and then it would take 10 days to 2-3 weeks before the procedure would be performed. Basically they make a small incision into the muscular portion of his thigh and insert a piece of tissue about the size and consistency of a gauze pad. This could be done with "happy" juice. There should be an increase in the rate of increase in his immune system recuperation and in about 10 weeks a biopsy would be performed to verify that it has worked.
There are many benefits for Peter and few risks. If successful his immune system would grow much faster than it normally would and he may not require all the usual childhood vaccinations. Another advantage would be that he would not be as limited in dealing with small children & infants; with his compromised immune system he could catch anything they do. With a better immune system he would be less at risk.
Peter had a nice visit with Pastor Ray today. I visited for a few minutes and then took advantage of having someone there so that I could go get a haircut. Peter brought him up to date on the medical situation, and we were both reminded that our church family is there for us, all we need do is ask.
Heather came by for a few minutes and is planning on coming out Saturday with her friend Mark. They will be out bike riding and plan to stop by here.
Tomorrow is Friday, right? It's hard to keep track of time lately. Hopefully it will be another short day.
Until then,
Wendy
The second thing is quite interesting. Peter has been asked to be in a clinical trial, actually right now he would be the clinical trial - the only participant right now. It seems that sometimes babies are born without thymus glands. Because the thymus gland is the "school" for T cells to learn how to fight infections, babies without thymus glands usually don't survive very long. It is also common that when babies are born with heart defects and require open heart surgery, they thymus gland is partially removed and discarded.
About 15 years ago a research MD wondered if parts of these glands could be transplanted into babies and if these would function as thymus glands for those babies. Of the 44 babies they have done it on, 32 have successfully converted these sections to function as the thymus glands to build up the babies immune as would happen normally.
In adults or most everyone over 15-20 years of age, the thymus glands atrophy and no longer functions. Since adults with cord blood stem cell transplants are basically newborn babies immune-wise, this trial would see if the same procedure would work in these adults. Peter has fully engrafted and since almost all his cells are from one donor, he is considered a perfect candidate.
He needs to decide by Monday and then it would take 10 days to 2-3 weeks before the procedure would be performed. Basically they make a small incision into the muscular portion of his thigh and insert a piece of tissue about the size and consistency of a gauze pad. This could be done with "happy" juice. There should be an increase in the rate of increase in his immune system recuperation and in about 10 weeks a biopsy would be performed to verify that it has worked.
There are many benefits for Peter and few risks. If successful his immune system would grow much faster than it normally would and he may not require all the usual childhood vaccinations. Another advantage would be that he would not be as limited in dealing with small children & infants; with his compromised immune system he could catch anything they do. With a better immune system he would be less at risk.
Peter had a nice visit with Pastor Ray today. I visited for a few minutes and then took advantage of having someone there so that I could go get a haircut. Peter brought him up to date on the medical situation, and we were both reminded that our church family is there for us, all we need do is ask.
Heather came by for a few minutes and is planning on coming out Saturday with her friend Mark. They will be out bike riding and plan to stop by here.
Tomorrow is Friday, right? It's hard to keep track of time lately. Hopefully it will be another short day.
Until then,
Wendy
Day + 28
Never got around to blogging last night so will do it now and then do another tonight. The second day at the clinic went well - only there from 8:45 until 2:00. Blood counts are still good but needed magnesium and potassium. Peter's rash is almost gone, looks much better and doesn't itch. He is peeling like crazy - sorta like a sunburn.
Because he is on prednisone his blood sugar is way up. The Nurse Practicioner called yesterday afternoon and said she had prescribed a diabetic testing kit for him to begin using. He tests before each meal and will be starting to give himself insulin. Not sure if they want to do just one injection/day or if he will be doing one before each meal. Hopefully this will all be resolved once he is weaned off the insulin. Otherwise there is another new regimen to add to his daily meds.
We haven't gotten out to walk at all lately. Both of us are tired and sleepy most of the time. We would probably feel better after walking - maybe today.
Every Thursday morning is a caregiver's support group at the clinic. I went this morning and it sure was nice to be reminded that unfortunately there are others in the same boat as we are, some even worse. Reminds me yet again how fortunate we are! Some folks have been going through all of this mess for 2-3 years.
Peter and I are both adjusting to living with someone again. Even though we were only apart for about 6 weeks it is amazing how many habits you can build up that you would not normally do - not always shutting the bathroom door, using the bed for a closet and dresser, you know just little things. Right now we are both tolerant of each other, but do let the other know that that is not what is usually done.
It should be a short day today - only needs magnesium, and to be taught how to inject himself. One of our pastors from Cary is coming by this afternoon to visit. It's nice to be remembered.
More later,
Wendy
Because he is on prednisone his blood sugar is way up. The Nurse Practicioner called yesterday afternoon and said she had prescribed a diabetic testing kit for him to begin using. He tests before each meal and will be starting to give himself insulin. Not sure if they want to do just one injection/day or if he will be doing one before each meal. Hopefully this will all be resolved once he is weaned off the insulin. Otherwise there is another new regimen to add to his daily meds.
We haven't gotten out to walk at all lately. Both of us are tired and sleepy most of the time. We would probably feel better after walking - maybe today.
Every Thursday morning is a caregiver's support group at the clinic. I went this morning and it sure was nice to be reminded that unfortunately there are others in the same boat as we are, some even worse. Reminds me yet again how fortunate we are! Some folks have been going through all of this mess for 2-3 years.
Peter and I are both adjusting to living with someone again. Even though we were only apart for about 6 weeks it is amazing how many habits you can build up that you would not normally do - not always shutting the bathroom door, using the bed for a closet and dresser, you know just little things. Right now we are both tolerant of each other, but do let the other know that that is not what is usually done.
It should be a short day today - only needs magnesium, and to be taught how to inject himself. One of our pastors from Cary is coming by this afternoon to visit. It's nice to be remembered.
More later,
Wendy
Tuesday, November 27, 2007
Day +27 First day at the clinic
What a day this has been, long and relatively boring. We had to be at the clinic by 9 so we figured if we were up between 7:30 & 8:00 that would be good. Well we got there by 9 but just barely. Peter got up hungry and as he was eating he wondered when he was supposed to take the pills he needed on an empty stomach - decided it would have to be mid morning. He was a bit disoriented/confused this morning which is probably to be expected after 30+ days in the hospital. He thought he slept through the night but I reminded him he got up once to open the door to the living room and I got up once to turn off a light he had turned on for who knows why. It is the first night he slept that well, but he realized at the clinic exactly how tired he was.
We were at the clinic until 4PM. He needed some electrolytes and platelets. We will go there everyday to see what treatments he may need and then stay there until all is done. Probably long days at first but as his new cells work better the time at the clinic should be shorter.
While there, there was a fire alarm/?drill. There were 2 patients and 2 family in the clinic at the time. All but 2 of the nurses evacuated the building. They said we would evacuate if it really was necessary. We looked out the window to find that everyone but us was out. Finally one of the physician's assistants came in (with his coat on) and said he thought all was well - so why did he have his coat on? Later they announced that all was clear and then that PA came back wearing his white coat. It was a really strange experience.
Arlene and Roy came by tonight and brought goodies to eat. We got caught up on all our activites and had a nice visit with them.
Well, our 10 votes last night for dancing with the stars did the trick - Helio won!
Clinic 8:45 tomorrow. Hope we can make it on time!
Wendy
We were at the clinic until 4PM. He needed some electrolytes and platelets. We will go there everyday to see what treatments he may need and then stay there until all is done. Probably long days at first but as his new cells work better the time at the clinic should be shorter.
While there, there was a fire alarm/?drill. There were 2 patients and 2 family in the clinic at the time. All but 2 of the nurses evacuated the building. They said we would evacuate if it really was necessary. We looked out the window to find that everyone but us was out. Finally one of the physician's assistants came in (with his coat on) and said he thought all was well - so why did he have his coat on? Later they announced that all was clear and then that PA came back wearing his white coat. It was a really strange experience.
Arlene and Roy came by tonight and brought goodies to eat. We got caught up on all our activites and had a nice visit with them.
Well, our 10 votes last night for dancing with the stars did the trick - Helio won!
Clinic 8:45 tomorrow. Hope we can make it on time!
Wendy
Monday, November 26, 2007
Day + 26 Gone
Well, Peter is gone from 9200 the ABMT unit at Duke and is in residence here with me in Durham. He got out about 1PM and we have been sittin' around doin' nuthin' most of the afternoon. He has got all his meds organized - 11 prescriptions that cost way too much money! He's got the heat cranked up high and I am dying! I've got shorts and a tee shirt on and I am still too hot! Guess I'll be sleeping in the other room with the door shut and the AC on.
We start going to the outpatient clinic tomorrow. Don't know what to expect yet - guess it all depends on if he needs blood etc. or not. I am sure there are lots of rules etc. we don't know yet. Should make it interesting.
I tried to vote by phone for dancing with the stars and had no luck - always a busy signal. Then I voted online for Peter and I and tried to set up an email address for Annie (our dog) but didn't have the right password to do that. So I only got to vote 10 times instead of 20.
Till tomorrow,
Wendy
We start going to the outpatient clinic tomorrow. Don't know what to expect yet - guess it all depends on if he needs blood etc. or not. I am sure there are lots of rules etc. we don't know yet. Should make it interesting.
I tried to vote by phone for dancing with the stars and had no luck - always a busy signal. Then I voted online for Peter and I and tried to set up an email address for Annie (our dog) but didn't have the right password to do that. So I only got to vote 10 times instead of 20.
Till tomorrow,
Wendy
Sunday, November 25, 2007
Day +25 Going, going . . .
WBC 8.8! All looks good for discharge tomorrow. I was partly right, Peter had alot packed and knew pretty much where everything else would go. Almost all of his meds are by mouth now and he only has one bag hanging. Maybe he won't have to come home with a pump.
I'll get training tomorrow on changing his bandage on the port. They will review with both of us his meds and any possible interactions - timing on some of them is crucial. Don't know how many pills there will be yet plus mouthwashes, creams and who knows what else.
We talked with his nurse today and she said since he got stem cells from cord blood he is basically a baby as far as his immune system is concerned - so we treat him like a baby as far as being near illnesses is concerned. Eventually he will have to get all his vaccinations again.
He can come with me to get groceries or to a movie or when he is eating more, we can go out to eat - just need to be sure we go at the least crowded times. We specifically asked about going to church on 12/9 and she said no way. Oh well, there is always next year.
I gave the front desk a list of what needed to be done for cleaning tomorrow and I will doublecheck with the manager in the morning to be sure there is no problem. The place just needs a good cleaning and the kitchen and bathrooms need to be cleaned with antibacterial stuff. Wanted the filters changed too. Don't want to take any chances.
Until tomorrow,
Wendy
I'll get training tomorrow on changing his bandage on the port. They will review with both of us his meds and any possible interactions - timing on some of them is crucial. Don't know how many pills there will be yet plus mouthwashes, creams and who knows what else.
We talked with his nurse today and she said since he got stem cells from cord blood he is basically a baby as far as his immune system is concerned - so we treat him like a baby as far as being near illnesses is concerned. Eventually he will have to get all his vaccinations again.
He can come with me to get groceries or to a movie or when he is eating more, we can go out to eat - just need to be sure we go at the least crowded times. We specifically asked about going to church on 12/9 and she said no way. Oh well, there is always next year.
I gave the front desk a list of what needed to be done for cleaning tomorrow and I will doublecheck with the manager in the morning to be sure there is no problem. The place just needs a good cleaning and the kitchen and bathrooms need to be cleaned with antibacterial stuff. Wanted the filters changed too. Don't want to take any chances.
Until tomorrow,
Wendy
Saturday, November 24, 2007
Friday, November 23, 2007
Day + 23 Counting Down to Monday
Well, it's official - the doctor's are shooting to discharge Peter from the hospital on Monday. He is very pleased about it and it is just what he needed to encourage him to eat more food. It looks like he will have eaten 3 small meals today and is trying to do better.
As part of the road to discharge Peter had a liver and spleen ultrasound to be sure there is no blockages or other problems. Should know the results soon. He was excited to be out of the ABMT unit and told the transport person they could leave him out by the elevators all day and he would be happy.
Sally & Garth from the CTK choir came to visit today. We got to know them during the choir trip to Italy that we were lucky enough to be able to go on. We don't sing - we are groupies and we do that job very well. Can't wait for the next trip.
Also saw Courtney, one of Kim's friends from elementary school. It sure is nice to see old and new friends. It is always a blessing to be reminded that we have some many friends.
If I know Peter, he will have all the pics off the walls tonight and probably be partially packed so there won't be so much to do Monday. He's gonna be like a kid waiting for Santa to come, so send all your positive thoughts his way so that he does get released on Monday.
Take care,
Wendy
As part of the road to discharge Peter had a liver and spleen ultrasound to be sure there is no blockages or other problems. Should know the results soon. He was excited to be out of the ABMT unit and told the transport person they could leave him out by the elevators all day and he would be happy.
Sally & Garth from the CTK choir came to visit today. We got to know them during the choir trip to Italy that we were lucky enough to be able to go on. We don't sing - we are groupies and we do that job very well. Can't wait for the next trip.
Also saw Courtney, one of Kim's friends from elementary school. It sure is nice to see old and new friends. It is always a blessing to be reminded that we have some many friends.
If I know Peter, he will have all the pics off the walls tonight and probably be partially packed so there won't be so much to do Monday. He's gonna be like a kid waiting for Santa to come, so send all your positive thoughts his way so that he does get released on Monday.
Take care,
Wendy
Thursday, November 22, 2007
Day + 22 It's a Boy!
I hope you all had a great Thanksgiving today! All things considered, we had a very good Thanksgiving. Peter felt good all day. He walked 7 laps at one time, almost .5 miles and felt a good tired when he was done. All the soreness he had yesterday was gone. They continue to change his meds from IV to pill form. We brought a large pill box with us and I think it will be filled with his daily meds.
I got to his room about 8:15 so I was there for rounds. His white blood count is 3.1 - the low end of normal is 3.2, so he is doing well. The swelling in his left hand and arm has decreased, actually it looks almost normal. His rash looks much better and hardly itches at all. The main concern right now is his eating, or lack of it. He says nothing looks appealing and he cannot think of anything he would like me to bring in. A friend of ours who is a cancer survivor says she lived on peanut butter and crackers for quite awhile so he is trying that - Thanks D.W.!
About 10 today Sue, Peter's nurse for the day came in with some good news that we had been waiting for. They took blood last week and sent it off to be checked. The results came back today: in his blood there are no cells left from Peter, all the cells are donor cells. Of those cells 98% are male and only 2% are female. So the little boy came through as the dominant donor. This means that he has engrafted the donor cells and the best part is that there are no cells of his left.
Oh, by the way, Percy Sledge sang "When a Man loves a Woman".
The kids and I met for brunch today at 11 and walked away stuffed. They came to visit at the hospital and then they needed to head out early. Kim and Todd had another Thanksgiving meal in Columbia and Heather was going to an "Orphans" Thanksgiving and then head to the beach to spend some time with the "gang".
Things should be pretty quiet this weekend, I may be Peter's only guest. He is feeling well so visitors are definitely welcome.
If things keep going well he should be discharged from in-patient status early next week.
Thanks for your prayers and your support. It makes this whole ordeal livable knowing we have such a good support group available to us if we need.
Wendy
I got to his room about 8:15 so I was there for rounds. His white blood count is 3.1 - the low end of normal is 3.2, so he is doing well. The swelling in his left hand and arm has decreased, actually it looks almost normal. His rash looks much better and hardly itches at all. The main concern right now is his eating, or lack of it. He says nothing looks appealing and he cannot think of anything he would like me to bring in. A friend of ours who is a cancer survivor says she lived on peanut butter and crackers for quite awhile so he is trying that - Thanks D.W.!
About 10 today Sue, Peter's nurse for the day came in with some good news that we had been waiting for. They took blood last week and sent it off to be checked. The results came back today: in his blood there are no cells left from Peter, all the cells are donor cells. Of those cells 98% are male and only 2% are female. So the little boy came through as the dominant donor. This means that he has engrafted the donor cells and the best part is that there are no cells of his left.
Oh, by the way, Percy Sledge sang "When a Man loves a Woman".
The kids and I met for brunch today at 11 and walked away stuffed. They came to visit at the hospital and then they needed to head out early. Kim and Todd had another Thanksgiving meal in Columbia and Heather was going to an "Orphans" Thanksgiving and then head to the beach to spend some time with the "gang".
Things should be pretty quiet this weekend, I may be Peter's only guest. He is feeling well so visitors are definitely welcome.
If things keep going well he should be discharged from in-patient status early next week.
Thanks for your prayers and your support. It makes this whole ordeal livable knowing we have such a good support group available to us if we need.
Wendy
Wednesday, November 21, 2007
Day + 21 Going in the right direction
Good day all!
It seems that the day did not begin or end on a good note but all the time in between was good. The ANC (I think those were the 3 letters) is over 500 and has been for 3 days. That is one of the criteria for discharge to out-patient status. The total body rash that Peter has is beginning to itch so he gets cortisone cream for that and today they started him on a 3 day program of prednisone to help clear it up.
Eating remains a problem. They discontinued the IV nutrition and hope that his appetite will come back. One of the side effects of prednisone is an increased appetite so that should help. He still has problems keeping stuff down. We think maybe part of the problem is that he is eating/drinking sometimes from a semi-reclined position. I think he is going to try to only take oral stuff while sitting up.
Peter is consistently getting in 1 mile/day broken up into 4 walks. He goes faster but not farther.
The nursing staff at the clinic had a full turkey dinner for all family members today. It was great! Kim, Todd, Sylvia and I walked there and back (10 minutes each way). I was hoping it was enough of a walk to burn up all the calories I ate, but I doubt it.
Yet again we were reminded today of how fortunate we are. There is another couple on the unit. He came in a week after Peter and is having a really rough time. They gave him morphine for pain and he was immediately addicted to it and really wacked out. His wife and the nurses had a difficult time tryin to keep him from climbing out of bed, pulling his clothes off and he almost pulled is central line out. To top it all off, he had to quit his job when he got sick and then she had to quit hers because she is his only care giver. Now they have used up all their financial resources and are working with the hospital staff to find a place for them to go when he is discharged. She has spent every night in the hospital sleeping in the recliner in his room. The hospital was finally able to call in a sitter to stay with him so his wife can have some time off, but she has no place to go. Hopefully the hospital will be able to find a place for them to go soon. This sure makes Peter's problems seem insignificant compared with theirs, but to him (us) they are significant. We still have this great network of friends, blog readers and family and we know they are all pulling for us!!! We really do appreciate it.
Everyone visiting leaves tomorrow, Sylvia in the morning and the kids in the afternoon. Then it will be just Peter and I and maybe we can just unwind and relax. If anyone is so inclined, visitors would be good over the weekend.
Happy Thanksgiving!!!
Wendy
It seems that the day did not begin or end on a good note but all the time in between was good. The ANC (I think those were the 3 letters) is over 500 and has been for 3 days. That is one of the criteria for discharge to out-patient status. The total body rash that Peter has is beginning to itch so he gets cortisone cream for that and today they started him on a 3 day program of prednisone to help clear it up.
Eating remains a problem. They discontinued the IV nutrition and hope that his appetite will come back. One of the side effects of prednisone is an increased appetite so that should help. He still has problems keeping stuff down. We think maybe part of the problem is that he is eating/drinking sometimes from a semi-reclined position. I think he is going to try to only take oral stuff while sitting up.
Peter is consistently getting in 1 mile/day broken up into 4 walks. He goes faster but not farther.
The nursing staff at the clinic had a full turkey dinner for all family members today. It was great! Kim, Todd, Sylvia and I walked there and back (10 minutes each way). I was hoping it was enough of a walk to burn up all the calories I ate, but I doubt it.
Yet again we were reminded today of how fortunate we are. There is another couple on the unit. He came in a week after Peter and is having a really rough time. They gave him morphine for pain and he was immediately addicted to it and really wacked out. His wife and the nurses had a difficult time tryin to keep him from climbing out of bed, pulling his clothes off and he almost pulled is central line out. To top it all off, he had to quit his job when he got sick and then she had to quit hers because she is his only care giver. Now they have used up all their financial resources and are working with the hospital staff to find a place for them to go when he is discharged. She has spent every night in the hospital sleeping in the recliner in his room. The hospital was finally able to call in a sitter to stay with him so his wife can have some time off, but she has no place to go. Hopefully the hospital will be able to find a place for them to go soon. This sure makes Peter's problems seem insignificant compared with theirs, but to him (us) they are significant. We still have this great network of friends, blog readers and family and we know they are all pulling for us!!! We really do appreciate it.
Everyone visiting leaves tomorrow, Sylvia in the morning and the kids in the afternoon. Then it will be just Peter and I and maybe we can just unwind and relax. If anyone is so inclined, visitors would be good over the weekend.
Happy Thanksgiving!!!
Wendy
Tuesday, November 20, 2007
Day + 20 Still moving up!
WBC is now 1.4, moving up slowly but surely. Discharge is in the near future. The nurse was explaining today that there are some numbers that they have to add together and do other math stuff with to reach a desired number. Once Peter reaches that number Peter can theoretically go home. She feels he is close to that number so they are starting to take away some IV meds and either eliminating the drug altogether or changing to pill or liquid form. He is still on the IV nutrition and is only eating small meals. That I think will be the biggest problem. When he doesn't think he can eat, he doesn't even try at all. Haven't asked yet if he could still be on IV nutrition and be discharged. I sure hope not. According to what I have read, he could get into trouble with his blood sugar. Guess we will find out in the next few days.
Sylvia stayed with Peter today so I could go to my stitching group. It was nice to be away and not feel guilty about leaving Peter alone at the hospital. Kim and Todd came about 5:30 tonight and we all stayed with Peter for an hour or so. He started to feel overwhelmed with all of us there so we left. The four of us went to a bar/restaurant in Durham and had a good time. At 8 the bar had a trivia game. We stayed for the beginning of it but since it was going to be a 3 hour game we did not stay. The first category was music. Todd knew the answers to all but one question and that was one from the 60's that I should have known--who was the original singer of "When a Man loves a Woman"??? do you know??
Tomorrow we will try and space visitors out better than today. At noon we will go to the ABMT (Adult Bone Marrow Transplant) clinic for a Thanksgiving meal provided for us by the clinic. If Peter is hungry we will bring him back a plate of food. Heather will be out in the afternoon and evening so Sylvia and I want to walk over to the Duke Chapel. It is a beautiful building - they don't make them like that anymore.
I apologize if I ramble or repeat myself. Sometimes I don't remember what I have said from day to day. All in all, things are still moving up!
Wendy
Sylvia stayed with Peter today so I could go to my stitching group. It was nice to be away and not feel guilty about leaving Peter alone at the hospital. Kim and Todd came about 5:30 tonight and we all stayed with Peter for an hour or so. He started to feel overwhelmed with all of us there so we left. The four of us went to a bar/restaurant in Durham and had a good time. At 8 the bar had a trivia game. We stayed for the beginning of it but since it was going to be a 3 hour game we did not stay. The first category was music. Todd knew the answers to all but one question and that was one from the 60's that I should have known--who was the original singer of "When a Man loves a Woman"??? do you know??
Tomorrow we will try and space visitors out better than today. At noon we will go to the ABMT (Adult Bone Marrow Transplant) clinic for a Thanksgiving meal provided for us by the clinic. If Peter is hungry we will bring him back a plate of food. Heather will be out in the afternoon and evening so Sylvia and I want to walk over to the Duke Chapel. It is a beautiful building - they don't make them like that anymore.
I apologize if I ramble or repeat myself. Sometimes I don't remember what I have said from day to day. All in all, things are still moving up!
Wendy
Monday, November 19, 2007
Day +19 WBC 1.2
Things are moving right along at a good pace! The doctors at rounds this morning suggested that it was getting to be time for all to be thinking in terms of discharge from the hospital and starting out-patient treatment at the clinic. Peter seemed a bit surprised - not sure why - but will be agreeable to discharge when the team decides. He told me later that sometimes he thinks he will be at the hospital for an indefinite length of time - it seems like he will never get out.
Compared to last week, he is doing great!! When he is awake he is able to concentrate for longer periods of time. He was able to eat parts of 3 meals today so maybe they can start to decrease the IV nutrition. He can walk for a .25 mile stretch at a time and recovers quickly from the exercise.
Peter's sister Sylvia arrived tonight from Florida, actually she was on her way back to VT but decided to stop and check up on Peter. We had a short visit at the hospital tonight and then Sylvia will spend most of the day with Peter tomorrow. They can catch up on family stuff.
Kim and Todd arrive sometime tomorrow. They will come by the hospital and visit for awhile. They are going to stay with Heather, Etta and Annie. Lily, their dog will be there also. We have not had all 3 dogs together before so it will be interesting to see how they all get along.
I really like the suite at the hotel. I just hope we don't find that it is much too small for the two of us. At least it is 2 seperate rooms, each with their own bathroom. Then, if needed at times, we can be completely apart. It will be interesting to find out just how much activity Peter can have away from the clinic or our hotel. I hope that if he wears a mask he can go out in public for short periods of time. That will help us both keep our sanity.
Keep sending those positive thoughts.
Wendy
Compared to last week, he is doing great!! When he is awake he is able to concentrate for longer periods of time. He was able to eat parts of 3 meals today so maybe they can start to decrease the IV nutrition. He can walk for a .25 mile stretch at a time and recovers quickly from the exercise.
Peter's sister Sylvia arrived tonight from Florida, actually she was on her way back to VT but decided to stop and check up on Peter. We had a short visit at the hospital tonight and then Sylvia will spend most of the day with Peter tomorrow. They can catch up on family stuff.
Kim and Todd arrive sometime tomorrow. They will come by the hospital and visit for awhile. They are going to stay with Heather, Etta and Annie. Lily, their dog will be there also. We have not had all 3 dogs together before so it will be interesting to see how they all get along.
I really like the suite at the hotel. I just hope we don't find that it is much too small for the two of us. At least it is 2 seperate rooms, each with their own bathroom. Then, if needed at times, we can be completely apart. It will be interesting to find out just how much activity Peter can have away from the clinic or our hotel. I hope that if he wears a mask he can go out in public for short periods of time. That will help us both keep our sanity.
Keep sending those positive thoughts.
Wendy
Days +17 and +18 Good Weekend
Oops, I forgot to blog last night. It was 1:30 by the time I went to bed and I did not even realize I had not done it until tonight. I will catch you up on both days.
After my "girl's sleepover" at the hotel Friday night, the weekend was fairly quiet. Peter is still not able to eat much food so the IV nutrition continues. He is not interested in most of what is available, and when there is something he wants he usually only eats 2-3 bites or if it is something he can munch on most of the day he will do that. The nurses say this is not unusual and that his appetite will come back. I don't think he will be discharged with the IV nutrition because I think they have to monitor him more closely with it.
Heather came to visit Sat. afternoon. Since Peter had an anti-nausea shot, he slept. It gave Heather and I a nice time to knit and to visit with each other. Peter's sisters called from a family wedding in Florida. He was on speakerphone so they all talked with him. His sister Sylvia comes tomorrow for a few days. Then she can report to all the family how he is doing.
Today was really quiet. I was the only visitor although Peter got several phone calls. He has been having some swelling in his feet, abdomen, face, and left arm. After a 15 minute walk this morning Peter noticed that his left hand was twice its normal size. The nurses looked at it and suggested we use ice on it. After two sessions with ice beginning above his elbow and extending to his knuckles his arm was almost back to normal. He is to watch it tonight and ice it again as needed.
Peter is still bothered with severe heartburn. He says it feels like a large pill is stuck in his esophagus. It takes quite awhile for the pain to go away.
Knowing that he is grafting the stem cells has made life in his room abit more tolerable. Now he knows that discharge from the hospital is in sight. We will both miss the "Good 'n Plenty" gang at Thanksgiving but know that this is all only temporary. We plan to be there next year.
That's all for now.
Wendy
After my "girl's sleepover" at the hotel Friday night, the weekend was fairly quiet. Peter is still not able to eat much food so the IV nutrition continues. He is not interested in most of what is available, and when there is something he wants he usually only eats 2-3 bites or if it is something he can munch on most of the day he will do that. The nurses say this is not unusual and that his appetite will come back. I don't think he will be discharged with the IV nutrition because I think they have to monitor him more closely with it.
Heather came to visit Sat. afternoon. Since Peter had an anti-nausea shot, he slept. It gave Heather and I a nice time to knit and to visit with each other. Peter's sisters called from a family wedding in Florida. He was on speakerphone so they all talked with him. His sister Sylvia comes tomorrow for a few days. Then she can report to all the family how he is doing.
Today was really quiet. I was the only visitor although Peter got several phone calls. He has been having some swelling in his feet, abdomen, face, and left arm. After a 15 minute walk this morning Peter noticed that his left hand was twice its normal size. The nurses looked at it and suggested we use ice on it. After two sessions with ice beginning above his elbow and extending to his knuckles his arm was almost back to normal. He is to watch it tonight and ice it again as needed.
Peter is still bothered with severe heartburn. He says it feels like a large pill is stuck in his esophagus. It takes quite awhile for the pain to go away.
Knowing that he is grafting the stem cells has made life in his room abit more tolerable. Now he knows that discharge from the hospital is in sight. We will both miss the "Good 'n Plenty" gang at Thanksgiving but know that this is all only temporary. We plan to be there next year.
That's all for now.
Wendy
Friday, November 16, 2007
Day + 16 Great news!
Please read Peter's blog today - he has great news and I would like you to read it from him first.
www.peter-vampire.blogspot.com
Wendy
www.peter-vampire.blogspot.com
Wendy
Thursday, November 15, 2007
Day + 15 Good news
Today Peter's white blood count hit 500 - something must be working!!! He said the drs. were very pleased. Of course, I was at the hospital at 8AM so that I could catch the drs. at rounds, but it was raining so they were all late. I left for Wilmington at 9:30AM and there was no sign of any of the doctors for rounds.
I just talked to Peter and he said his day was good. He was sleepy so he will tell me more tomorrow. I have to unpack some of the stuff I brought back from Wilmington and then I am going to bed, hopefully to sleep.
G'nite
Wendy
I just talked to Peter and he said his day was good. He was sleepy so he will tell me more tomorrow. I have to unpack some of the stuff I brought back from Wilmington and then I am going to bed, hopefully to sleep.
G'nite
Wendy
Wednesday, November 14, 2007
Day + 14 Hanging In There
Peter continues with his up and down path. Today was not so good, nausea most of the day, medicated for the nausea which resulted in sleeping almost all day. Peter is not having much success eating. He either has no interest in the food, or eats and then it come right back up. The staff assures us this is quite normal. They will probably start IV nutrition tomorrow. As explained today, he can still order meals and try and eat if he can, but if eating doesn't work at least we know he is getting adequate nutrition.
According to his weight this morning (around 4AM) he is up 11 pounds. His face is puffy, his feet and left arm from elbow to hand are swollen as is his abdomen and other parts further south. He got Lasix today but it didn't seem to make much difference. I am going to try and get to the hospital for rounds tomorrow so I can hear first hand what the team says.
I know he gets frustrated with all these things. He remains pleasant as much as possible. He really doesn't complain much except to say he is tired and tired of all this. Hopefully all this stuff will pass soon.
He got some good news today: white blood count is up to .3. The drs. seem to be thinking that his new marrow is starting to engraft and maybe even work. Still haven't decided if it is the girl or boy that is doing it. I'm rooting for the girl.
I'll be going home for the day tomorrow. I don't think we were really thinking when we came up here - we sure left alot home that we will need. I have a 2 column list of stuff to bring back with me including winter clothes, heavy coats and gloves. Since I have no oven here I will also bring a toaster oven and my crock pot. When Peter is ready to eat, I will be ready to cook.
That's it for today,
Wendy
According to his weight this morning (around 4AM) he is up 11 pounds. His face is puffy, his feet and left arm from elbow to hand are swollen as is his abdomen and other parts further south. He got Lasix today but it didn't seem to make much difference. I am going to try and get to the hospital for rounds tomorrow so I can hear first hand what the team says.
I know he gets frustrated with all these things. He remains pleasant as much as possible. He really doesn't complain much except to say he is tired and tired of all this. Hopefully all this stuff will pass soon.
He got some good news today: white blood count is up to .3. The drs. seem to be thinking that his new marrow is starting to engraft and maybe even work. Still haven't decided if it is the girl or boy that is doing it. I'm rooting for the girl.
I'll be going home for the day tomorrow. I don't think we were really thinking when we came up here - we sure left alot home that we will need. I have a 2 column list of stuff to bring back with me including winter clothes, heavy coats and gloves. Since I have no oven here I will also bring a toaster oven and my crock pot. When Peter is ready to eat, I will be ready to cook.
That's it for today,
Wendy
Tuesday, November 13, 2007
Day + 13 Moving onward
Good day today. Peter was up and awake most of the day. His voice is returning slowly. He went most of the day without a fever but had a slight one when I left at 9PM. Tests were ordered to see if maybe he has a bladder infection.
He was up almost 4 pounds on the scales this morning and the general concensus is water retention. He feet were larger as was his left arm and hand. His abdomen was distended. This is a result of the treatment and drugs he has been taking since being admitted to the hospital. Did you know that men can retain fluid in 2 small round body parts? I guess they can become quite large and painful - and we thought only women retained fluid. The night nurse was going to try and wait until the morning before giving him lasix. She thought that he might like to sleep instead of run to the bathroom most of the night. If he gets too uncomfortable, she will give it earlier.
Peter received two "care" packages today, one from his sister Caroline and family and the other from my cousin Lori and family. Since I was the only visitor today the packages came at just the right time.
The nurses were telling us tonight that Peter is the favorite patient on the floor - all the nurses want to have him as their patient. They say he never complains, likes to goof off and only calls for help when absolutely needed. He has even learned how to adjust his IV monitors when it says he is occluded. It is nice to hear that in spite of all the stuff he is going through, the real Peter shines through!
More tomorrow,
Wendy
He was up almost 4 pounds on the scales this morning and the general concensus is water retention. He feet were larger as was his left arm and hand. His abdomen was distended. This is a result of the treatment and drugs he has been taking since being admitted to the hospital. Did you know that men can retain fluid in 2 small round body parts? I guess they can become quite large and painful - and we thought only women retained fluid. The night nurse was going to try and wait until the morning before giving him lasix. She thought that he might like to sleep instead of run to the bathroom most of the night. If he gets too uncomfortable, she will give it earlier.
Peter received two "care" packages today, one from his sister Caroline and family and the other from my cousin Lori and family. Since I was the only visitor today the packages came at just the right time.
The nurses were telling us tonight that Peter is the favorite patient on the floor - all the nurses want to have him as their patient. They say he never complains, likes to goof off and only calls for help when absolutely needed. He has even learned how to adjust his IV monitors when it says he is occluded. It is nice to hear that in spite of all the stuff he is going through, the real Peter shines through!
More tomorrow,
Wendy
Monday, November 12, 2007
Day + 12 Counts abit higher!
I apologize for the missing picture in yesterday's blog. I uploaded one, but I have no idea where it went. It was there when I proofed everything and now it is gone. It should be right above these words, if not, I'll try again tomorrow.
All counts are now rising slowly. One doctor said Peter could be discharged in as little as 10 days! So let's hope the counts keep rising.
All days now seem to be cyclical - Peter feels fine, stays awake for several hours at a time, then falls asleep for hours at a time. Sometimes he can eat a full meal and be ok and other times he loses it as fast as he eats it. If he would remember to stay ahead of the meds for nausea I think he would be ok. The nurse practicioner was in today. If he has one more day with a fever, then they will start him on IV nutrition. She says that they would rather get him on this early than to wait and have to really work hard to get him to where he should be nutrition wise. He seems ok with it, it's just another bag to hang on Herb. (I have a pic of Peter & Herb but it is too large to post).
Peter is up and moving when he needs to. He still is not getting enough walking in during the day. I can't say much to him because I am not walking either. We both need to increase our fluid intake and our walking!
We had a nice visit this afternoon from our friend and pastor Tom Nelson. We talked of trips to Las Vegas and New Jersey. We compared some of the casinos and I encouraged Tom to go to the Mohegan Sun Casino in CT. We also talked about the Madrigal Dinner at church (Christ the King Lutheran Church in Cary) and Tom mentioned that Peter was in the prayers of the church. After a short prayer Tom left and said he will return soon.
Even though the changes in blood counts seem small, they are still going in the right direction. I think we both get discouraged because it seems that change is not fast enough. Living in a hotel or hospital room alone is not much fun. We are both blessed to have good friends to take care of us. Thanks Beth for picking me up and taking me out for lunch! Every little bit helps!
Hopefully tomorrow I will have something to post on Peter's blog. Until then, Thanks!
Wendy
Sunday, November 11, 2007
Day +11 Voice almost gone
Well, not only has Peter lost his hair, he has lost his voice. It seems that whatever it is that is causing the indigestion/nausea/sore throat is causing his voice to be almost not there. Or, it could be a reaction to all the meds he is on. Bottom line is, if you try to call him and no one answers, call me. If he can't be heard he won't answer his phone.
The drs. remain very positive. He had a temp (101) this morning so they ordered a chest x-ray and changed the antibiotic he was on. He seemed very congested this morning, but seemed much better by the time I left today.
One new predicament he encountered today was that his hands and fingers were beginning to swell. Since we were unable to find someone to cut his wedding ring off before he was admitted, we asked the nursing staff if they could do it. They brought in this neat little ring cutting device and after about 10 minutes the ring was off. That means we will have to get new wedding rings next Sept. for our 35 anniversary!!
Cindi & Fred came by again today. Peter & Fred played cribbage and then decided to go for a walk around the unit. Fred tried to hand washer at the nurse's station and thought it was pretty neat. Including the walk with Fred, Peter walked .75 miles today. He said he would try and get another walk in so we could say he walked a mile.
I have put a picture in this blog of Peter with no hair. He was medicated, thus the goofy look on his face. He still some moustache, but is finding he doesn't need to shave much any more.
While talking with another patient and her husband tonight I found out that once his numbers reach a certain level you are allowed out of the unit for short periods of time. Of course you must wear a mask or two, gloves and probably a hat and sweater to keep you warm. They can go only as far as the elevators but at least they sights are different and the air is not quite so dry. This patient was on day + 17 so maybe by next weekend we can walk outside of the unit.
Thanks again for your thoughts and prayers! Keep the cards and comments coming.
Wendy
The drs. remain very positive. He had a temp (101) this morning so they ordered a chest x-ray and changed the antibiotic he was on. He seemed very congested this morning, but seemed much better by the time I left today.
One new predicament he encountered today was that his hands and fingers were beginning to swell. Since we were unable to find someone to cut his wedding ring off before he was admitted, we asked the nursing staff if they could do it. They brought in this neat little ring cutting device and after about 10 minutes the ring was off. That means we will have to get new wedding rings next Sept. for our 35 anniversary!!
Cindi & Fred came by again today. Peter & Fred played cribbage and then decided to go for a walk around the unit. Fred tried to hand washer at the nurse's station and thought it was pretty neat. Including the walk with Fred, Peter walked .75 miles today. He said he would try and get another walk in so we could say he walked a mile.
I have put a picture in this blog of Peter with no hair. He was medicated, thus the goofy look on his face. He still some moustache, but is finding he doesn't need to shave much any more.
While talking with another patient and her husband tonight I found out that once his numbers reach a certain level you are allowed out of the unit for short periods of time. Of course you must wear a mask or two, gloves and probably a hat and sweater to keep you warm. They can go only as far as the elevators but at least they sights are different and the air is not quite so dry. This patient was on day + 17 so maybe by next weekend we can walk outside of the unit.
Thanks again for your thoughts and prayers! Keep the cards and comments coming.
Wendy
Saturday, November 10, 2007
Day + 10 Up and then not so up
Peter had very good news this morning. His white blood count went from .1 to.2. Even though that seems to be an insignificant amount it may mean that the new stem cells are starting to work and form marrow. His drs are pleased but cautious - it seems a bit early for this to be happening. They had blood drawn to verify if the stem cells are working and to see if it is the little boy stem cells or the little girl stem cells that are working. Since we all know that if you need work done you can count on a woman - I am sure it is the little girl's that are working.
It seems that to be safe Peter needs to get the anti-nausea shots on a regular basis. He felt good this morning and ate cereal and fruit. Lunch was bouillion and yogurt, but dinner was not possible. Late afternoon today he was very nauseas and felt poorly. No temp. just unable to keep anything down. After his shot, he went right back to sleep. I know we seem to dwell on his eating, but that is a major problem for stem cell transplantees. If they cannot eat on their own they can get IV nutrition. The problem with the IV nutrition is that it is hard to get back to eating real food. So, IV nutrition is a last resort.
Hair report: eyebrows look good, moustache is thinner but still there. Peter is thrilled that his hair might be brown when it comes back in. Then his hair color will match his driver's license again!
Cindi and Fred stopped by for about an hour today. The four of us had a nice visit. We turned the TV off and missed the end of the Carolina/NC State game. Found out the results later. If Peter is feeling up to it, Fred hopes to beat him in cribbage again on Sunday.
That's all for now,
Wendy
It seems that to be safe Peter needs to get the anti-nausea shots on a regular basis. He felt good this morning and ate cereal and fruit. Lunch was bouillion and yogurt, but dinner was not possible. Late afternoon today he was very nauseas and felt poorly. No temp. just unable to keep anything down. After his shot, he went right back to sleep. I know we seem to dwell on his eating, but that is a major problem for stem cell transplantees. If they cannot eat on their own they can get IV nutrition. The problem with the IV nutrition is that it is hard to get back to eating real food. So, IV nutrition is a last resort.
Hair report: eyebrows look good, moustache is thinner but still there. Peter is thrilled that his hair might be brown when it comes back in. Then his hair color will match his driver's license again!
Cindi and Fred stopped by for about an hour today. The four of us had a nice visit. We turned the TV off and missed the end of the Carolina/NC State game. Found out the results later. If Peter is feeling up to it, Fred hopes to beat him in cribbage again on Sunday.
That's all for now,
Wendy
Friday, November 9, 2007
Day + 9
Today was an ok day. Peter slept better last night because of the addition of a sleeping pill. He was fairly good in the morning but dozed off quite abit in the afternoon. He complains alot about having a dry mouth so I will bring him some lifesavers or other hard candy tomorrow. He says the thought and look of food makes him nauseous (why don't I have that problem) so he is not eating. They do have a special protein shake they make and he will drink that.
He got IV lasix (diuretic-makes you pee alot) today for the continued swelling of his feet. His blood counts are slowly rising which is good. Nothing really dramatic. White blood cells went from less than .1 to .1 so that is a good thing.
Peter continues to have some problems with concentration. He can read maybe 3 pages in a book before he has to reread because he doesn't remember what he has read. I asked if he wanted to play cards or cribbage but he doesn't feel ready for that yet.
This whole event has been a real eye opener for me. I get support and encouragement from friends and family and also from perfect strangers. I sat across from an RN at lunch yesterday and we got to talking. When she learned why I was at Duke she asked if she could add Peter to her prayer list. She asked for his name so she could pray specifically for him. After hearing about his activities at Duke, our college age waitress told me she would pray for him. That is just amazing to me.
Tonight I went to another stitch & bitch group - this was a group of Heather's friends, co-workers and stitching pals. We had a very nice time and some delicious dessert and hot chocolate. We did a fair amount of stitching and bitching also.
Until tomorrow night,
Wendy
He got IV lasix (diuretic-makes you pee alot) today for the continued swelling of his feet. His blood counts are slowly rising which is good. Nothing really dramatic. White blood cells went from less than .1 to .1 so that is a good thing.
Peter continues to have some problems with concentration. He can read maybe 3 pages in a book before he has to reread because he doesn't remember what he has read. I asked if he wanted to play cards or cribbage but he doesn't feel ready for that yet.
This whole event has been a real eye opener for me. I get support and encouragement from friends and family and also from perfect strangers. I sat across from an RN at lunch yesterday and we got to talking. When she learned why I was at Duke she asked if she could add Peter to her prayer list. She asked for his name so she could pray specifically for him. After hearing about his activities at Duke, our college age waitress told me she would pray for him. That is just amazing to me.
Tonight I went to another stitch & bitch group - this was a group of Heather's friends, co-workers and stitching pals. We had a very nice time and some delicious dessert and hot chocolate. We did a fair amount of stitching and bitching also.
Until tomorrow night,
Wendy
Thursday, November 8, 2007
Day + 8
Hello all,
We are really loving all the responses we get via the blogs! We are so fortunate to have such great friends and co-workers.
Slow day today. As I suspected, Peter needed platelets and blood. He got 2 bags of platelets last night and 2 bags of blood today. He may need more platelets tonight. He was in and out of sleep last night and up until about 2 PM today.
I brought in some chinese food so we were able to have lunch together in the conference room - a nice change of pace. We may do this more often as he is feeling better.
All in all everyone is pleased with his progress. During rounds yesterday morning they noticed the terrible bruises on his arms from the shots he get. The site for shots was changed to his belly. The nurse yesterday must have great technique - no bruising. The one today was not so good - large bruise.
I left early today because my friend Nella was coming for dinner and to sleepover. We had a great (no calorie) dinner at Red Robin and then came back to the hotel room. 7 of my "Tuesday morning stitchers that meets on Thursday night" drove up here for stitchers. It was so nice to see all of them. I am so lucky to have such great stitchin buddies.
Thanks to all we send cards and emails and come to visit. It means alot to both of us. FYI: I am unable to respond to questions sent in the comments section because I do not get the email addresses of those who send comments. I will try to remember to answer questions on the blog itself.
Wendy
We are really loving all the responses we get via the blogs! We are so fortunate to have such great friends and co-workers.
Slow day today. As I suspected, Peter needed platelets and blood. He got 2 bags of platelets last night and 2 bags of blood today. He may need more platelets tonight. He was in and out of sleep last night and up until about 2 PM today.
I brought in some chinese food so we were able to have lunch together in the conference room - a nice change of pace. We may do this more often as he is feeling better.
All in all everyone is pleased with his progress. During rounds yesterday morning they noticed the terrible bruises on his arms from the shots he get. The site for shots was changed to his belly. The nurse yesterday must have great technique - no bruising. The one today was not so good - large bruise.
I left early today because my friend Nella was coming for dinner and to sleepover. We had a great (no calorie) dinner at Red Robin and then came back to the hotel room. 7 of my "Tuesday morning stitchers that meets on Thursday night" drove up here for stitchers. It was so nice to see all of them. I am so lucky to have such great stitchin buddies.
Thanks to all we send cards and emails and come to visit. It means alot to both of us. FYI: I am unable to respond to questions sent in the comments section because I do not get the email addresses of those who send comments. I will try to remember to answer questions on the blog itself.
Wendy
Day + 7
All continues to go well with Peter. His oncologist from the transplant team and his nurse were in and they are very pleased with how he is doing!
The morphine pump is no more and Peter says the pain in his feet and legs is tolerable. Still some swelling in the feet, but that too seems to be going down.
His eyebrows and moustache are thinning rapidly. He has not been without a moustache since 1971. Our girls have never seen him without one. He keeps a hat or doo-rag on most of the day because he is cold without hair. He has started putting moisturizer on his head so it is not so dry.
Last night (the 6th) was a very good night for him. 6 of his friends from Rotary came to visit. They talked about the usual guy stuff including the trip they all took to the Dominican Republic for Habitat.
Still can't find my camera. Will have to find one to borrow. Several women have said they would shave their heads to match Peters but have something big coming up so they can't. Come on guys - YOU can do It.
Have a great day! I'll try and send more tonight. My stitching group is coming here tonight so I might not get a chance.
Wendy
The morphine pump is no more and Peter says the pain in his feet and legs is tolerable. Still some swelling in the feet, but that too seems to be going down.
His eyebrows and moustache are thinning rapidly. He has not been without a moustache since 1971. Our girls have never seen him without one. He keeps a hat or doo-rag on most of the day because he is cold without hair. He has started putting moisturizer on his head so it is not so dry.
Last night (the 6th) was a very good night for him. 6 of his friends from Rotary came to visit. They talked about the usual guy stuff including the trip they all took to the Dominican Republic for Habitat.
Still can't find my camera. Will have to find one to borrow. Several women have said they would shave their heads to match Peters but have something big coming up so they can't. Come on guys - YOU can do It.
Have a great day! I'll try and send more tonight. My stitching group is coming here tonight so I might not get a chance.
Wendy
Tuesday, November 6, 2007
Day 6
Not much change today. Peter had the morphine pump removed and now has pills to take if he needs it for the pain in his legs. So far tylenol is working so lets hope it keeps up. He continues to feel pretty good, can stay awake most of the day, and his drs. are very pleased with his progress.
Peter had 2 female visitors today, Arlene and Linda. He enjoys the company - I don't count as company! He did say he was tired and since Linda and I were going out to eat, we left early. One of the volunteers at the hospital recommended a chinese restaurant near our hotel. It was excellent.
Speaking of volunteers, there is a different volunteer each day who comes to visit each patient. They mainly just chat for 10-15 minutes and then move on to the next patient. All of the ones we have met have been cancer survivors so I think there is a special bond there. There is also a lady who comes in dressed like a clown. She has snacks, magazines, books for the patients. The snacks are at no charge.
Linda is staying here with me tonight. It is so nice to have someone to talk to! Night time can be very long when you are by yourself. I have great friends who come and encourage me to get out. Usually if I am not in Peter's hospital room I am back at the hotel all locked in.
Thanks for your thoughts and prayers.
Wendy
Peter had 2 female visitors today, Arlene and Linda. He enjoys the company - I don't count as company! He did say he was tired and since Linda and I were going out to eat, we left early. One of the volunteers at the hospital recommended a chinese restaurant near our hotel. It was excellent.
Speaking of volunteers, there is a different volunteer each day who comes to visit each patient. They mainly just chat for 10-15 minutes and then move on to the next patient. All of the ones we have met have been cancer survivors so I think there is a special bond there. There is also a lady who comes in dressed like a clown. She has snacks, magazines, books for the patients. The snacks are at no charge.
Linda is staying here with me tonight. It is so nice to have someone to talk to! Night time can be very long when you are by yourself. I have great friends who come and encourage me to get out. Usually if I am not in Peter's hospital room I am back at the hotel all locked in.
Thanks for your thoughts and prayers.
Wendy
Monday, November 5, 2007
Day + 5 Say good-bye to Peter's hair
Peter showered this AM and left most of his hair in the drain. When Monique, the nursing assistant came in she suggested that he shave the rest of it off. She said she had a kit and she would be glad to do it for him. Then Peter called me so that I would not be totally surprised. Actually it looks pretty good except that his head is two tone, tanned and not tanned. His head is nicely shaped but oh boy, do his ears stick out. He has been wearing his doo-rag and the knit cap I made him because he says he is colder with no hair. I think he likes to alternate between a biker and a swami.
He thinks he is starting to lose his moustache (if he would stop pulling on it, it would be ok) and maybe his eyebrows. I read somewhere that with total body radiation you lose all your hair. I knit him a small moustache but he won't wear it.
Once I find my camera (I've only been here 2 weeks and I am already losing stuff) I will take a pic and then try to upload it to his blog. If anyone would like to demonstrate solidarity with Peter and shaves their head, I will post their pic on Peter's blog also. Any takers?
Other than the head shaving, it was a good day. Peter was awake and up for most of the day, and was out walking in the halls also. He headed to the treadmill when I left for the day. He had a nosebleed last night that they had difficulty getting to stop. Since his platelets are very low, he has no clotting mechanism. They had to give him 2 bags of platelets and have him lie flat on his back before the nosebleed stopped.
We look forward to comments of the blogs - keep them coming please!
Wendy
He thinks he is starting to lose his moustache (if he would stop pulling on it, it would be ok) and maybe his eyebrows. I read somewhere that with total body radiation you lose all your hair. I knit him a small moustache but he won't wear it.
Once I find my camera (I've only been here 2 weeks and I am already losing stuff) I will take a pic and then try to upload it to his blog. If anyone would like to demonstrate solidarity with Peter and shaves their head, I will post their pic on Peter's blog also. Any takers?
Other than the head shaving, it was a good day. Peter was awake and up for most of the day, and was out walking in the halls also. He headed to the treadmill when I left for the day. He had a nosebleed last night that they had difficulty getting to stop. Since his platelets are very low, he has no clotting mechanism. They had to give him 2 bags of platelets and have him lie flat on his back before the nosebleed stopped.
We look forward to comments of the blogs - keep them coming please!
Wendy
Sunday, November 4, 2007
Day + 4 False Alarm
The day started out pretty much as usual. No problems that needed my attention last night. My friend Cindi & I had a "sleepover" at my hotel suite. We decided to go get bagels for breakfast and since it was so nice outside we would walk to Brueggers. Then Cindi mentioned the Flea Market in Raleigh, and did we want to go. Well, that is one of the best flea markets in the state so I checked with Peter. He said he was fine and to go. I asked about his hair and he said he was losing it in big clumps. He had his doo-rag on and we could decide if his head needed shaving or not. About 5 minutes later he calls me back and said the dr.s said he should probably just go ahead and shave it now. One of the nurses/asst. could do it if he asked her. I said either she could do it or I could.
So Cindi and I go to the flea market and had a good time. Lots of good fleas today. Unfortunately we forgot that the Raleigh Marathon was today and the start/finish line was at the stadium that is right near the flea market so it took us abit longer to get there than we expected.
Meanwhile, as I go through the flea market I am envisioning Peter with large clumps of hair left on his head - sort like bunny tails except on his head. I hoped that he had shaved his head before I got there.
Imagine my surprise when I get to his room and he takes off his doo-rag. He still has quite abit of hair all over his head - not in the clumps like I imagined. He is lucky to have very thick hair so today it just looked thinner. We do agree that it is only a matter of time before all is gone.
That was my false alarm - I really expected to see something quite odd looking, not someone who still has more hair that others.
All in all, he had a good day. He is up and out of bed alot more than before but does tire very easily. I have never seen someone who can fall asleep as quickly as he does.
That's all until tomorrow. Check Peter's site - there is a new posting.
Wendy
So Cindi and I go to the flea market and had a good time. Lots of good fleas today. Unfortunately we forgot that the Raleigh Marathon was today and the start/finish line was at the stadium that is right near the flea market so it took us abit longer to get there than we expected.
Meanwhile, as I go through the flea market I am envisioning Peter with large clumps of hair left on his head - sort like bunny tails except on his head. I hoped that he had shaved his head before I got there.
Imagine my surprise when I get to his room and he takes off his doo-rag. He still has quite abit of hair all over his head - not in the clumps like I imagined. He is lucky to have very thick hair so today it just looked thinner. We do agree that it is only a matter of time before all is gone.
That was my false alarm - I really expected to see something quite odd looking, not someone who still has more hair that others.
All in all, he had a good day. He is up and out of bed alot more than before but does tire very easily. I have never seen someone who can fall asleep as quickly as he does.
That's all until tomorrow. Check Peter's site - there is a new posting.
Wendy
Saturday, November 3, 2007
Day + 3
Peter had another good day today. His mouth and throat are feeling better so he is eating and drinking more. His hair is thinning; I asked him to warn me ahead of time when he loses most of it. I want to be prepared.
Today he started retaining fluid in his ankles and feet. The put him on a diuretic and told him to drink more water. When a diuretic and extra water are combined it means many more trips to the bathroom. So Peter and his pole "Herb" visit the bathroom on a very regular basis. All of this is an expected side effect from all the treatments he has been getting. Moving around more will also help to decrease the swelling.
Heather was in today and she stayed while I went home early. It was a good time for Peter & Heather to visit.
I came back later with Cindi and Debbie. We visited with him for about an hour and then we went to Carrabas for dinner. It sure is nice to have friends and family close by. It helps both of us to have visitors. Even though Peter cannot leave the unit, over the course of 24 hours he sees and talks to more people than I do. Usually if I am not at the hospital, I am back at the hotel room. I'm not one to eat out by myself so I eat the main meal at the hospital (by myself) and then have a small dinner. Since I'm not big on cooking I usually eat fruit and cheese or peanut butter.
We're gonna make it through this little hiccup in our lives and be better for it.
Thanks again for your love and support.
Wendy
Today he started retaining fluid in his ankles and feet. The put him on a diuretic and told him to drink more water. When a diuretic and extra water are combined it means many more trips to the bathroom. So Peter and his pole "Herb" visit the bathroom on a very regular basis. All of this is an expected side effect from all the treatments he has been getting. Moving around more will also help to decrease the swelling.
Heather was in today and she stayed while I went home early. It was a good time for Peter & Heather to visit.
I came back later with Cindi and Debbie. We visited with him for about an hour and then we went to Carrabas for dinner. It sure is nice to have friends and family close by. It helps both of us to have visitors. Even though Peter cannot leave the unit, over the course of 24 hours he sees and talks to more people than I do. Usually if I am not at the hospital, I am back at the hotel room. I'm not one to eat out by myself so I eat the main meal at the hospital (by myself) and then have a small dinner. Since I'm not big on cooking I usually eat fruit and cheese or peanut butter.
We're gonna make it through this little hiccup in our lives and be better for it.
Thanks again for your love and support.
Wendy
Friday, November 2, 2007
Day + 2 - Something is getting thinner
Neither Peter or I or our seperate patiences are getting any thinner but it is starting to look as though that white/gray stuff on the top of the head is getting thinner - either that or he is growing more skin on his head. He started to be able to get several hairs when he ran his hand through his hair; maybe it will just get thinner. He does have 2 doo-rags, one knit cap and several ball caps to help hide the loss.
Today was another good day. He is trying to get the nursing staff to adjust to his routine rather than theirs. He gets irritated when they come in several times instead of doing all that needs to be done at one time, especially when he is trying to sleep. He's already tired from his treatment so not getting as much sleep at any one time as he normally would makes him just a bit grumpy.
The leg pains he has had for a few days have progressed down to his ankles which are starting to swell. He is not drinking enough or walking around enough so that is something we will have to work on every day. When the pain gets really bad he moves around alot and can't seem to get comfortable. Eventually he takes his pain med and that causes him to fall asleep.
His blood counts are still low but no worse than before. Not sure when exactly we might expect to notice some changes for the better. The doctors are very good about explaining stuff to us and they are all very pleased with his progress.
Keep the cards, calls and visits coming. It really brightens up both of our days.
Have a great weekend!
Wendy
PS Check www.peter-vampire.blogspot.com for a new posting.
PSS I walked .5 miles today and mapped out a 2 mile walk.
Today was another good day. He is trying to get the nursing staff to adjust to his routine rather than theirs. He gets irritated when they come in several times instead of doing all that needs to be done at one time, especially when he is trying to sleep. He's already tired from his treatment so not getting as much sleep at any one time as he normally would makes him just a bit grumpy.
The leg pains he has had for a few days have progressed down to his ankles which are starting to swell. He is not drinking enough or walking around enough so that is something we will have to work on every day. When the pain gets really bad he moves around alot and can't seem to get comfortable. Eventually he takes his pain med and that causes him to fall asleep.
His blood counts are still low but no worse than before. Not sure when exactly we might expect to notice some changes for the better. The doctors are very good about explaining stuff to us and they are all very pleased with his progress.
Keep the cards, calls and visits coming. It really brightens up both of our days.
Have a great weekend!
Wendy
PS Check www.peter-vampire.blogspot.com for a new posting.
PSS I walked .5 miles today and mapped out a 2 mile walk.
Day + 1
Sorry I didn't write last night, couldn't get on the internet because my password was invalid. About midnight I realized that since it was the beginning of the month I might need a new password, and guess what, I was right. So now I am good for another month.
Yesterday was day + 1. From now on the days are counted like that and hopefully when we get to day + 90 we will be getting ready to come home.
Peter had a great day yesterday. Kim and I visited him for a short time in the morning and then he told us to go ahead and go shopping because he wanted a nap. Well, you don't have to tell us twice to go shopping so we did. We had a great time, and Heather joined us there. Unfortunately we didn't see the Cheesecake Factory until we were all done shopping - we will be sure to do that next time. Peter needed new shampoo yesterday so I bought the smallest bottle I could find - I figured as soon as he got new shampoo his hair would fall out - so far it is still there.
We got back around 4:30 and Peter said he had a great nap. He got up and walked around the unit and then walked on the treadmill for .3 miles. His mouth sores are going away so he has been eating alot better. The drs. are all pleased with his progress so far. It sure would be nice if this is the worst it gets!
Until tonight,
Wendy
Yesterday was day + 1. From now on the days are counted like that and hopefully when we get to day + 90 we will be getting ready to come home.
Peter had a great day yesterday. Kim and I visited him for a short time in the morning and then he told us to go ahead and go shopping because he wanted a nap. Well, you don't have to tell us twice to go shopping so we did. We had a great time, and Heather joined us there. Unfortunately we didn't see the Cheesecake Factory until we were all done shopping - we will be sure to do that next time. Peter needed new shampoo yesterday so I bought the smallest bottle I could find - I figured as soon as he got new shampoo his hair would fall out - so far it is still there.
We got back around 4:30 and Peter said he had a great nap. He got up and walked around the unit and then walked on the treadmill for .3 miles. His mouth sores are going away so he has been eating alot better. The drs. are all pleased with his progress so far. It sure would be nice if this is the worst it gets!
Until tonight,
Wendy
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