Sunday, 5/31/09

Peter's kidney function is improving and the kidney doctors are cutting back on his fluids.

He is far more exhausted today and has been in a deeper sleep of heavy, deep breathing than he has been in the previous days. I have continued to force him to eat at least 3 bites of something at each meal and especially before pills in the morning.

His CRP level was up for the second day in a row and the swelling is increasing in his arms and hands. His hospital bands had to be cut off one arm because they were cutting into him.

They had taken away some antibiotics, but now they are giving some back. The bigger concern is that even with the growth factor shots he's been getting for about 2 weeks now, his white count is not coming back up like it should.

This also happened last fall after his transplant. At the time I was concerned about it and they kept telling me that it was typical of a second transplant. He finally came up enough to be released from the hospital, but never truly got back a normal count on any of his blood levels including white even after we returned home.

The doctor said that he needs the white cells to fight whatever infection he has. It's not a serious infection like last fall. All his blood cultures have come back negative and he's not having any other problems. He's been keeping red count and platelets better than earlier and not taking as deep of dives in those levels, but his bone marrow is not producing white cells at all and hasn't been.

He then immediately asked me if I was the same blood type as Peter and I told him that we were both O positive. He told me he wanted me to come with him right away and get tested to donate white cells to him. I thought maybe he had the idea I was a sibling or something and not his wife and pointed out that I am not a family member. He told me that you don't need to be a family member except for stem cells. White cells just need to be the same type. They don't even have to be positive, but could be O positive or negative.

So he rushed me off that very minute and got an order written and contacted the charge nurse of the day to get me to the lab and get me tested. He didn't go into total detail, but between what I learned from him and the nurse the idea is that if I am a match (or if anyone else we can find here is a match), then I would be given a growth shot and steroids to make me produce extra white cells. I might experience flu-like symptoms. I would then go to the apheresis area the next day and spend about 3 hours for them to collect the white cells to give them. White cells will only stay alive a matter of a couple of days before they die off. That is why he encouraged me to find more donors because I could only give every so many days of going through that process and they would die off before I could provide him enough again.

He said he would be able to get over this hump of increased CRP level with white cells. That has nothing to do with the Myeloma.

He was ordering a bone marrow biopsy to be done on Monday or Tuesday when they could get to it. He needed the results of this to see where the Myeloma was. If it was not down at least 30%, then he said there really wouldn't be much more they could do for Peter. That was the first that anyone was that frank with us except for our new oncologist at home.

He said if it was down 30%, they could give him a bag of his infected stem cells from last year and antibiotic to fight that infection as a boost to see if his bone marrow would recover. That seems to be the big key here that no one has mentioned to us before. I'm wondering now if after all this time his bone marrow is just giving out? It may not be so much a fight against the Myeloma because if his bone marrow can't produce what it is supposed to, then it doesn't make any difference what happens to the Myeloma.

So, for right now he is still resting comfortably and not aware of too much going on around him. We'll wait for the bone marrow and results. It's going to seem like forever so we know what comes next.

If he can't fight this, I will just take him home.

Saturday 5/30/09

Peter has gradually been getting better according to the numbers, but is still out of it. I couldn't get to talk to anyone yesterday about any plan or what to expect.

As of yesterday, the diarrhea has stopped. Yesterday, last night, and early this morning he had some incontinence in his bladder that they think is probably from all the anti-diarrhea meds relaxing the bladder muscles as well as the other muscles. The rest of today that has not seemed to be a problem so far.

The doctor on call for the weekend stopped in as did the renal doctors. The renal doctors seemed to think that he was doing fine and still don't see any need for dialysis, but he's just under the cusp and that could change at any time. He's still dehydrated, but he's stabilized now instead of getting worse.

His BUN hit 99 and they said 100 and over is dangerous. It dropped to 93 and has stayed there two days in a row now. His creatinine dropped out of the 3's to 2.7. His urine output seems to have decreased about half, but it is hard to gauge based on what might have been lost in the bed and he may be keeping some of the fluids that he needs due to the dehydration. He's still thirsty and has a dry mouth and takes sips of water every time he wakes up.

He's been getting blood every day and platelets as well. His white count is not moving.

The doctor on call looked over his medications and asked who ordered him to be on Thalidomide. I told him that he was taking 100mg. of that with the 7 day chemo regimen and we were told to continue it until we saw Dr. Barlogie and he discontinued or changed it. I explained that we didn't get to see the doctor last Tuesday as scheduled because Peter was in the hospital. I also explained that we are waiting on a plan or hearing some detail of what they have in mind for him.

The doctor said that the Thalidomide needs to be discontinued as well as a long list of meds. He said that and others were causing him to be so out of it. He was over medicated and didn't need all of those things. He stopped all diarrhea meds since he hasn't had any movement at all in over 24 hours. He made some changes to his fluids based on recommendations from the renal doctors.

He said that we will see what happens over the next 24 hours and adjust more as needed. He said right now we need to see if the white count will recover. It never really did after the transplant. He asked about remaining cells in the freezer and I told him how many he had left and that they were infected. I told him he was only given 2.5 million for the transplant in November. I'm wondering if they may give him a "boost" with more stem cells to help his counts if he doesn't bounce back.

He also asked about the bone marrow biopsy and chemo and I told him the dates he had chemo as outpatient and that he had the bone marrow biopsy within 48 hours of chemo and it showed 95% Myeloma in the bone marrow. He said he needs to have another one this week because that one was probably not accurate.

I may not know a plan, but I certainly got a lot more action and interest out of this doctor than the doctor that had been seeing him since his admission.

I've had a lot of advice and been thinking to the point my brain is sore. It's been suggested that I go home for a while since Pete is being taken care of and until he is ready to be released. It's been suggested I go stay with family for a while and get away.

The week of June 22nd I will be teaching a class in Louisiana (about 350 miles from here in Little Rock) for four days. My son will be coming home from China for the first two weeks of July. That's the only time that he can come home. He's coming to help with a long list of things that are falling further and further behind at home.

I was thinking about leaving for a while since it's seems that all I'm doing is running up bills by staying here and paying for lodging and paying for pet sitting, lawn care, and utilities at home.

I had promised my father to attend an historic military convoy on the Lincoln Highway (Rt. 30) for at least a day while it passes through his area or perhaps for a week to go to South Bend, IN. I don't see that being possible.

I think I'd better save up my time off from here until it's most needed. If I leave now for a week, then I'd be back and have to leave again and I may need to be gone for 3 weeks.

I'm hoping that it may work out that at the end of June Pete is stable enough and they think he will need a break to recover that we would get to go home anyhow for a couple of weeks and it will just all work out. Either way, I must be gone during those times so either he will be in the hospital or I will take him home with me.

I have felt more burned out and overwhelmed and tired of all of this more this week than in all the years since his diagnosis in 2002. I went to someone whom I trust here and asked for help.

I feel myself slipping on details and memory and it scares me. I am beyond able to keep up with bills and mail and people I need to contact and forms that need to be submitted.

Everyone here keeps telling us we need to just move here. I would sooner deny Peter care here than live in this area sadly. The heat and humidity that I hated when I lived in Oklahoma are here already in the mornings and evenings as I come and go here at the hospital. There are too many things that I really don't like here and I get no feeling of "home" or sense of belonging here. I did in Charlotte, NC and I do in Roanoke, VA and I felt that I could move to Salt Lake City, UT. But I don't want to live here.

Still, I don't know what to do for the long term. Maybe it's best to sell our house, but the thought of repairs needed from neglect and lack of maintenance over the past two years and all the stuff that would need to be dealt with just make me sick thinking about the work involved.

We couldn't live without our pets and where would we live if we sold the house. I don't know the answer and it makes me weary thinking about it. I know I can't keep up all these expenses and not work more or have a full-time job and doing either is tough with the care Pete needs.

In the past God has always provided. I try to just calm myself with that thought. I'm not looking for a free ride, just a solution to the problems at hand.

Thursday, 5/28/09

I had hoped to have some answers today or at least an idea of what lay ahead, but it didn't happen.

Thursdays is when all the doctors and head nurse have a conference and go over every patient. They used to make rounds and do this, but now they do it in a conference room. Based on some bad experiences we encountered during their rounds last fall, I think it's for the best.

The doctor that is assigned to him right now just doesn't have much to say and doesn't seem to offer me any level of information that I'm looking for when I ask questions. In past experiences here a doctor has been able to tell us what the "big man" says he has in mind for treatment. She just tells us we will have to wait until we are out of the hospital and see him ourselves. I don't like it!

Pete continues to deteriorate right before my eyes and I seem completely helpless to do anything. When he first was admitted, he was exhausted, but could open his eyes and move around in bed and would thank the nurses for every little thing. I was able to have him eat some jello or soup twice a day.

Yesterday he started getting really unresponsive in that I couldn't shake him or call his name and have him wake up. He did wake slightly to ask for water or ask for the urinal, but it was more of a motion than anything.

Today, I couldn't get him to respond at all when I arrived no matter how much I touched him or yelled his name at him.

We have the same nurse we had yesterday and it hasn't made things any easier. She doesn't communicate at all and just treats him like an object. There is no dignity and no compassion or sign she even realizes that he is a human being. She offered no help to clean him when she came in and I let her know he had another bout of diarrhea or had his urinal full.

She brought in pills that I didn't know anything about and left them and when I asked for the doctor she just told me I'd have to talk to the doctor with no help to contact the doctor.

A huge cup of contrast was brought in and left and when I questioned this, I was just told that there was a CT Scan ordered. I explained that there would be no way for him to drink all that and again asked to talk to the doctor, which went ignored as far as I could tell.

Finally after rounds the doctor came in briefly and I very nicely and calmly explained that we must be involved in the care plan. If a new drug or test is going to be ordered, please talk to us about it first. That doesn't mean we are going to disagree with it, but we want to know why something is being ordered. The one drug that was ordered was one that made his white count drop last fall and since yesterday was the first day that his count came up we'd had to have it drop. And it dropped today.

I explained that with the little sips of water is is having that there is no way he is alert enough to drink 32 oz. of contrast liquid. I explained that he is totally unresponsive today.

She said for him to drink whatever little bit that he could and he would get a CT Scan to see if there was anything else in his gut that was causing him to be distended and have such severe diarrhea. She also said a renal doctor would be in to see us.

A renal fellow did make a brief appearance and said he'd have to consult with the rest of the team. Being a teaching hospital, the team will change June 1 we know. That also means that this doctor that doesn't tell me much should change too possibly.

Today Peter's arms and belly are twice their normal size. His legs are not affected. The doctor said that the fluids he has been getting are the wrong type and that he should have a different type of fluid. He also said that even though he's been getting fluid, he is very badly dehydrated. The type of fluid he's getting and perhaps something to do with his veins is why he is retaining fluids in his arms and belly.

It seemed sort of like the old saying about "water, water, everywhere but not a drop to drink".

He couldn't get Peter's attention either. He said that he is becoming unresponsive due to his kidneys shutting down.

We talked about the lack of a port to do dialysis and that one might need to be put in. I told him that seemed very risky since his white count was bottomed out and surgery seemed like a huge risk. He said he would consult with the rest of his team and they'd talk to us. I'm assuming that will be tomorrow morning.

He is still having diarrhea, but it's only been 6 or less times today instead of every 30 minutes so perhaps the drugs are finally working or else there is nothing left to come out.

The nurse brought in another cup of pills and I explained that he has been to unresponsive for me to get his attention to try to take the previous cup. She said she would just leave them and I suggested that she not. I thought that in her leaving two cups of pills that she was checking them out and that it would show they were taken when they were not. I also am pretty sure that it's against the rules.

I'm scared for what will happen next. His CRP level and LD level are coming down nicely. He needed platelets today and still needs blood but we haven't seen it today. The nurse said she would let the night crew handle it. They won't be happy.

I'm scared that he's shutting down and nothing will be done in time. I'm scared for him to be here alone and be totally unresponsive. He can't use the call button or reach water or anything. If he tries to mumble or ask for something no one will be in the room to help him.

Maybe that's what ICU is for. I don't know. Someone at the hospitality house told me that when they can't do enough on their own they go to ICU, but if that were to happen I would think it would have by now.

The night nurse has come on and seems to be really attentive. I can see that she will take care of things tonight. She doubts that he will have a CT Scan tonight, but she said that if one of the regular nurses had been involved today they would have seen that it was done.

I must do some laundry this evening as I am out of clothes. Somehow I must get up early and get back over here in case they decide to do the scan or the renal team shows up. I think it's going to be a heck of a Friday.

There is also a recall on my laptop that expires on 5/31. I need to send it in to have the replacement hinge installed, but I don't know how to do this and not have a computer available.

The last two nights I have just gone back to the room and broke down in tears. I am just so tired of everything.

Wednesday, 5/27/09

Physically, there is no change in Pete. If you look at labs, you can see changes.

His CRP level is continuing to drop meaning that the infection is going down. His white count started the climb back up today so I expect to see more of that trend in the upcoming days.

His platelet level still bottoms out each day and he must receive platelets. His BUN and creatinine are both going up instead of down like they were.

He is very bloated and looks twice his size. His belly is huge where it was flat when he came in since he only weighs 198 lbs. He does not have any swelling in extremities, which is good.

The diarrhea still persists with no change. I demanded the doctor do something to stop it. She told me that there was nothing more she can do. That doesn't seem possible. You can't go extended periods with such a quantity of losing this much. I think his health is at risk.

The first two days in the hospital, he had super attentive nurses and aides that had a schedule that they checked him, cleaned him, and turned him. The last two days, that has not happened. I've tried to get up and check him every couple of hours and he's always soiled and I clean him and change the bedding. I've started asking for help in doing this as it is a lot of work and much easier with two people.

Yesterday afternoon his blood pressure was dangerously high. The nurse kept paging the doctor, but could not get her at all. By the time the shift ended, she explained her attempts and had me write down our concerns and documented them in the chart. She also passed this info on to the night nurse.

This morning the nurse we had didn't know anything about this. She wasn't terribly friendly and all business. I asked her to please contact the doctor and have her come in to address these issues. I don't know if she tried or not as she didn't acknowledge me one way or the other even when I asked her about it later.

About 1:00 I finally started walking the halls looking for the doctor or someone to request she be paged. I found the doctor and we went to the room where she examined Peter. She said she didn't believe there was a need for him to be back on his blood pressure medicine and was not concerned about fluid overload. She said the swollen belly was due to his intestines getting a workout and being inflamed. I don't have any facts to disagree, but somehow I just don't believe her.

I told her that there is no change in the diarrhea and that we need to stop it. She said there is nothing else that she can do. I insisted that there has to be something and that I knew that this must be stopped.

I lifted the sheet and there was more evidence and I showed her exactly what we are dealing with. I told her that we'd just cleaned him up only half an hour prior to that.

She said that he does need to have nutrients. I told her that I was giving him jello twice a day and that was a lot more than he'd eaten after his other sessions of chemo when he just wouldn't eat anything for a week or two. That's why I had insisted he eat something twice a day.

She insisted that he have IV proteins and carbohydrates. I told her that I was sure he would refuse them. She wanted to hear it from him. He has not been awake for any of the days he's been in the hospital and is not the least bit alert. That is why I have medical power of attorney. We attempted to wake him up and ask him and he just responded "no thank you". She asked him about 3 times with the same response. I tried to settle it, but she was very insistent and wanted to discuss it with him, which he was not capable of doing. She wanted to know the reason why and wanted to know if he was worried about side effects or thought he didn't understand that it would just go in via IV. He didn't have a clue what she was saying and was fast asleep.

He is just almost lifeless in the bed. He can't communicate except to ask for water which is really just a mumble that I can interpret. He just sleeps no matter what is going on around him.

I asked the doctor about his Myeloma and she went and checked. She said the bone marrow biopsy after his chemo still shows 95% of Myeloma. It may be that it was done too close to the chemo to be accurate, but is hard to say at this point. His other markers in his blood work such as the free light chains are coming down.

We didn't know before and we don't know now what, if anything, they will be able to offer for treatment. All they want to do is focus on the diarrhea and infection and when that is gone and his counts have recovered, they will talk to us about anything else.

I'm a little frustrated both by Peter's current condition that is very depressing and in not knowing. The other doctors we've had during our hospital stay all were in contact with Dr. Barlogie and could pass on to us what he said. For whatever reason this doctor only says we'll have to wait until we are out of the hospital and see the doctor at the clinic.

I just feel helpless and worthless here as well as hitting a point of being just overwhelmed. I want to just pack up and go home. I'm costing us money being here because I have to pay for lodging and food and still pay for expenses at home, and I don't seem to be any help. I can't talk to Peter. I'm not sure he even truly knows I'm here. I can't get anywhere with anything I try. Everyone here seems to be doing the work. I would just be worried that if I left no one would be here to speak up for him or that he might pass away and I wouldn't be with him.

I'm not sure what to do other than pray for God's guidance at this point.

Monday, 5/25/09 Memorial Day in hospital

Yesterday the CRP level was higher, but the fever was down. Diarrhea is a big problem.

New hospital policy since our last stay in 2008 here is that diapers are not allowed. The reason is that if hospital staff puts on diapers and then doesn't check them, a patient can go a long time laying in waste and prompting infection or skin irritations.

It seems archaic, but "them's the rules". So, they have disposable bed pads that they place under him. Medication isn't affecting him to stop the problem so every hour or two we have to roll him on his side, clean him, place new pads, and roll him back. I'm hoping to see a doctor and request something stronger to stop the problem.

He has no appetite and is just sleeping and out of it. I have insisted that he eat at least a few bites of jello, soup, or toast once in the morning and once in the evening. I don't want him to have stomach problems from taking pills on an empty stomach and it compound like it did last year.

We are in the new hospital that was constructed last year while we watched from our room in the old part of the hospital. It has touches that indicate the architect and/or interior designer had a great influence. It's aesthetically-pleasing, but not practical. There are several "flaws" that are totally uncalled for in construction. Because of that, tomorrow all patients will have to be moved back to the old part of the hospital.

The two biggest problems are with the bathrooms in the patient rooms. The floor was not sloped at all to the floor drain and this was not discovered until patients moved into the new rooms and showers were started. Also, there is a threshold at the bathroom door that is too high and patients aren't able to push their IV poles over it.

I also noticed just a few minutes ago in the nutrition room that the refrigerator door swing was the wrong way and very difficult to stand in front of it and open. If the hinges were simply reversed it would be fine.

We have heard numerous complaints from patients and families in waiting rooms and at the hospitality house about the new hospital. The old hospital rooms had futons and recliners. The new hospital is very chic with a hard pullout couch and a straight chair.

The chair has no lumbar support and people that sit with their family members are experiencing terrible back pain. I found this to be the case within the first 90 minutes I was there and I don't have back problems.

I made no attempts to spend the night in the hospital. I am able to stay at the hospitality house as long as I remain on the second floor and pay for my stay there since a patient is not in the room with me. It's an added expense, but I've found it better. I get a better bed and a small chance to get away from the hospital.

The level of care at both the clinic and the hospital so far has been much improved from last year. I am impressed. We have only had one nurse that was a little less than nice and helpful at the clinic a week ago, but besides that the attention to detail and sanitation is improved with patient care so far. That helps me feel better about going away at night.

Peter's white count continues to drop. He is getting daily growth factor shots to aid his bone marrow to produce when it starts to recover. That should start happening in the next few days.

The doctor just ordered a stronger drug via IV for his diarrhea so I'm hoping this helps by the end of the day.

5/23/09 Pete hospitalized

Pete was admitted to the hospital this evening with very elevated CRP levels and fever. Five antibiotics and Tylenol later no change. Received blood and platelets as well as fluids. Blood pressure has been super low since yesterday's bone marror biopsy.

Will post more later. Just getting in very late to room tonight. Not staying at hospital with Pete.

Thursday, 5/21/09 - Chemo complete

Yesterday the 7 day chemo was officially complete. We were to see the doctor today, but he wasn't there. We were only expecting him to schedule a bone marrow biopsy to re-stage and wait for the results next week to decide what to do. We saw the P.A. instead and he scheduled the bone marrow biopsy for tomorrow morning.

Each day (7 days a week), we have to go to the clinic. There is no less than an hour wait in the waiting room and once in a while it is 1.5 to 2 hours wait just to get our name called. Then vitals are taken and labs are drawn. Blood for labs is sent to the lab and it's an hour or more to get the results back.

While we wait to get the results, Pete gets some IV's. He's getting some anti-biotics and anti-fungals that are very expensive in pill form for us to get as prescriptions. Then when the lab results come back, an APN reviews them and issues any orders that are needed. Some days it's platelets, blood, magnesium, or fluids. Then we have to wait for that.

So every day is action-packed. There's no break in the action. It's important to keep an eye on everything every day and as lax as things seemed while we were inpatient last year, things seem to be well watched now as an outpatient. We both feel good about that and don't complain about all the time we spend in the waiting rooms or in the general process.

The hospitality house that we are staying in this time isn't as new and plush as the other one, but we find it much more comfortable. We are cold from the a/c a lot of the time, but that is the norm for this part of the country anyhow. I wear a jacket everywhere.

There are not very many people here for the time we've been here. We've made friends with one lady and her son and daughter-in-law that take turns coming to be caregiver. We are the only two families in this entire 2-story complex that don't smoke. Everyone else bands together and sit either on the deck outside or by the entry door outside and smoke and visit the entire evening. We don't get to know them at all. They order food out together or go shopping together. They are a tight knit bunch. We feel a little like outsiders, but it's O.K. because we sure don't want to be in a smoking club. I think they are all probably very nice people though.

Tuesday when we see the doctor and review what the chemo has done and assess where we are, we should be able to get a plan of action. We suspect we'll still need to stay here for a couple of more weeks to try the plan while closely watched and then either switch to some other plan or get to a stage where something is working and Pete is more stable so we can venture home for a few weeks and come back.

We'll report more next week.

Prunes

Is one enough? Are two too many?

Two are too many.

Friday, 5/15/09 - Doctor visit and more

I apologize for not posting the news from the Wednesday's doctor's visit. That was a very long, somewhat shocking, and rather depressing day. We've had very long days and haven't gotten back to the hospitality house until about 8:00 PM each evening. I check email and am just too pooped to write anything.

We don't yet know what the correct order of things or how doctor's appointments should work. On the last visit and this visit, we had a nurse come in and hand us a big bundle of papers. They were test results. In previous visits, we received these after the visit and after we had general information about what the test results were. I took it that these were to be given to our doctor at home and took those to him.

This time I asked the nurse who was going to go over these with us. She informed us that we were to read them and if we had questions ask the P.A. or doctor. It's been made very clear to us that since our doctor just happens to be the head doctor of this whole place that we are to not bother him with questions.

These are not just lab results, but are technical reports of the MRI, CT Scan, and PET Scan. They are a little over my head to read. I can pick out a few words of anatomy or descriptive terms, but the rest of them are not understood by the common person.

The P.A. came into the room and I told him what the nurse said and asked what was really supposed to happen on a doctor visit. Sometimes a nurse comes in first, sometimes he comes in first, sometimes they both come in after another and sometimes no one comes in before we see the doctor. I need to know what is supposed to happen.

I also informed him that I thought it was inappropriate to be given this stack of test results and be expected to read and understand it. I told him what I read of it sounded terrible. I told him that if there was bad news, I didn't think we should get it by reading our own test results. I asked him to please express my opinion to the department when they met.

He read through all them and was a little too technical for us so I kept interrupting him to tell me what part of the body he was talking about and what he was saying. Bottom line is that Pete is pretty bad off.

A lot has happened and some of it I blame on mis-communication. When we were here at the end of March, the Myeloma had become active again since his release in December. It was at 20% of his bone marrow.

At that time, the doctor wanted us to stay for two weeks and we said that we couldn't. He said that we needed to treat this now (then) and that we must stay. He left the room then and it wasn't open for discussion or compromise.

It wasn't explained to us what was going to happen except that Pete was going to receive Velcade. Velcade we knew as a drug that has worked very well for Peter over the last several years and we didn't understand why we couldn't get this at home. We now know that things might have been different if someone had just explained things to us and if we didn't have such a hot bed of problems to handle at home.

At any rate, the Myeloma is now at 95% of his bone marrow. So it's exactly the same as when we came last September. It jumped this much since the end of March!

There are lesions all over his bones so he could easily break a bone and that is accounting for his bone pain. His kidney function is decreased too.

When we were here in March, the doctor had order a Pic line to be placed. This is a line that runs into a vein and is placed in his elbow and has two external tubes to use to give IV's. They claimed at the time that they were doing this because he needed fluids. We argued about this and they wouldn't give in at the time and finally Pete had just said let them do it.

He didn't have his port under his skin in his chest area anymore because it had been removed back in November when they were trying to stop all the infections he had as an in patient in the hospital. We didn't understand why they didn't just put in a port.

The stupid thing in March was that they didn't want to give him fluids in the clinic because they were going to close and wanted to send him back to the hotel with a bag like the chemo bags. We didn't know why we couldn't have just come in the morning and had them stick an IV in his hand and give him fluids at the time. They were very insistent about both of these things.

The other stupid thing in March was that after they put in this Pic line, they drew labs and we discovered the next day that the labs indicated that he was not dehydrated at all and didn't even need the fluids!

When we returned home with orders for our doctor to administer Velcade, there was no time listed to give it and then re-check. We were also told by one of the phone nurses that she saw no reason for the Pic line and that she recommended our doctor have the line removed and have a regular single port put in.

NOW, we know the rest of the story as the late Paul Harvey would say.

Had we stayed in Little Rock back in March like the doctor ordered, we would have received Velcade for only two weeks and then been tested to see if it was working. We know it didn't work because even though he's gotten it for the past month at home, his Myeloma has gone from 20% to 95%. Had we stayed in March, we would've discovered this before it got to 95% and we would have then tried another option.

Why didn't anyone tell us this? Why didn't anyone tell us to take it for two week and return to see if it was working? The phone nurses already had been commenting that the free light chains were going up like crazy so they knew the Myeloma was active.

Instead of just telling us that we need to do something, tell us the whole story so we can follow through.

The doctor said that the disease has become extremely aggressive, which it was when I brought Peter to Little Rock last September. So we've gone through two rounds of chemo, a transplant, and lots of maintenance drug and we are completely back to where we are except that he's not on dialysis.

The doctor ordered a Pic line put in and for us to begin high-dose chemo immediately. He asked if we could stay this time. I told him I was prepared to stay for 2-3 weeks. He said we'd need to stay longer than that. I asked how long and didn't get an answer. We said we'd stay and fight. That's all he needed to hear.

When the nurse came in to process all his orders, she sent us back to the waiting room to set things up for us. She said we should plan to stay at least a month. She was very good at answering my many questions.

The reason that we need a Pic line now is that the chemo bag that Pete's going to be attached to and have to carry for 4 days has to have to entry points. We told her we had a Pic line and were told to have it removed and that we had a new port placed. She got excited because she thought maybe we had been advised to get a double port and that would handle our needs. Unfortunately, (more mis-communication or lack of it) we were not told by the nurses here to request a double port and were told that they didn't know why we had a Pic line and to have it removed. If we had left it in or had a double port put in either one would have been a help now. But how would we know?

They rushed us off to have a Pic line put in the same place where the other one had been removed just a month earlier. We had to go back to the doctor's office and wait for the rest of the details to be set up for us.

We were given a fistful of prescriptions. I asked about some pharmacy assistance because we did not have pharmacy coverage and couldn't afford to buy prescriptions. We were told that to apply for this would take to long and he must start these drugs in the morning along with his chemo. The nurse said that she could contact one of the social workers. I told her that we were to contact a social worker when we were done with our appointment anyhow about our lodging arrangements. The manager at the hospitality house mentioned it to us as we were heading to the doctor.

The nurse called the social worker and left a voice message. She also sent her an email. Then she called the secretary and was told that she was on her way to the clinic where we were so she had all the front desk staff keep an eye out for her to let her know that we needed to see her ASAP.

This went on for the rest of the afternoon. The nurse was obviously running ragged trying to find this woman. She finally gave up about 4:15. She didn't know why the woman hadn't responded to emails or voice mails and suggested that maybe her secretary had some information so we called her. The secretary informed us that the woman was right there and transferred the call.

When I told her that we'd received a message this morning about our housing, she commented that she had requested to talk to us a week ago. Huh???? We asked her about help with the prescriptions. She said that she was getting ready to leave and we'd have to talk to her tomorrow. We tried to explain the urgency and that we'd been sitting for a couple of hours waiting on her. All she said was that she had to go and would be back tomorrow.

The nurse was less than happy. She suggested that I might try Sam's or Wal-Mart for generics, but really didn't know how much these would cost. There really wasn't anything else that I could do at that point and we were very exhausted mentally and physically and hadn't eaten.

I managed to get two prescriptions that were $20-25 each and would just have to do without the rest.

We got back to the room about 8:30 that night. We fell into bed. We were too tired to think about eating even.

Thursday morning, we arrived at the clinic to begin chemo. I had asked the nurse the day before about doing this as inpatient and about costs that Medicare would cover as outpatient. We knew from information that we'd been given what we should and shouldn't allow them to do as outpatient and that insurance wouldn't cover inpatient if it wasn't medically necessary.

We met an outstanding A.P.N. whose attention to detail is to be commended. She was able to transfer orders from the $343 anti-biotic that I couldn't afford at the pharmacy to be administered via IV and ordered some additional IV's each day based on his condition and history. She really made things easy for us even though we were there for 8 hours receiving IV's and getting ready to begin chemo.

Pete will receive chemo for 7 days. Day 1, 4, 7 he will receive Velcade. He will up his nightly Thalidomide dose from 50mg to 100mg. He will take Dexamethasone (steroids) on the day and day after Velcade in 20mg doses. He will carry a portable pump that administers certain chemo 24 hours a day for the first 4 days. One bag of chemo will run over the 4 days and the other bag runs over 24 hours and will be changed daily.

Because of his kidney function, he is receiving shots to reduce his calcium and IV and pills to reduce uric acid. This is to offset the additional calcium and uric acid that is expected to rise once the chemo starts killing the Myeloma.

So far he is tolerating the chemo fine, though is still sleeping constantly and has no appetite. The steroids should be making him hungry and should be keeping him very alert.

He is also receiving platelets, blood, and magnesium as needed and has had all of the above between yesterday and today.

He needs to get exercise and exercise his lungs because the tests showed that while there has continued to be something small in the bottom of his lungs, it has gotten worse. It's nothing that can be heard with a stethoscope, but is worsened by all his time in bed sleeping. The more he can exercise his lungs the better. If he were to get even a tiny bit sick, that would turn into pneumonia and would possibly kill him.

He's taking prescriptions for antibiotics, anti-fungals, anti-viral, among other things.

We see the doctor again on 5/21. I suspect that nothing much will happen other than he will order the tests repeated to see what the Myloma level is after the chemo. What will happen after that, we have no idea.

We know that after chemo his counts will drop and then will rise again. I somehow doubt that we will get to go home when the counts come up, but may then be in for some other treatment if the Myeloma goes down substantially. The trick is going to be that we need to keep the Myeloma down. Nothing we've done to date has done that since last year. If this doesn't make the Myeloma go down or we can't find something to keep it down, then there won't be anything else that we can do. We are both worried.

Of course there are lots of things that we wanted to be doing at home. We've had to give up home for our garden this year. We hope that we'll be home in time for our big annual cruise night. We had planned on accompanying my father on an historical military convoy across Route 30, but it looks like we'll still be here and will miss that too.

We'll have to see what happens after this chemo. One step at a time.

Thursday morning we went to the clinic where we had another extremely long day. Pete was given some chemo via IV and was set

Tuesday, 5/12/09

Another long day, but at least we have completed all the tests the doctor ordered.

We spent the entire morning in the clinic. Labs were drawn and sent off. Pete got platelets while we waited for the labs to return.

Learned some very interesting things.

First, doctor of the day told me that anytime you have gross fluctuations like we did yesterday, you automatically assume mechanical failure of the testing equipment. They are only machines that run your blood for the tests. So all the stress from yesterday was really nothing to be concerned about. Now if you're bleeding from somewhere, then of course that might be a little different.

Second, low and behold the lab said this morning that they had trouble with their CBC machine and had it down for repairs this morning. So, not only does that explain all yesterday's funky numbers, but also backs up the doctors information. Also, because of this all labs were very late in returning.

Pete's labs came back fine. He didn't even need the second bag of platelets today before his bone marrow biopsy, though it certainly didn't hurt him.

We couldn't make our second bone marrow appointment for 9:00 because we were at the lab so long waiting, but I called. Lucky for us, they were able to reschedule us for 1:30. We had the MRI at 5:00.

We didn't get the full labs. The nurse that we had today said he didn't see anything more to order. I don't know why being that everyone else has had the right information and ordered full labs and that I had a copy of the lab request with me. So, we didn't get the metabolic panel and don't know how his creatinine, magnesium, potassium, and such are. We have been keeping an extra close eye on the creatinine.

I'm sure the doctor won't be terribly pleased and I'm sure he won't have his test results on everything in time for our appointment. I'm not expecting any miracles tomorrow. I rather expect he'll want to try something for a week or two while we stay here and then be retested to see how we do so he can stick with that or change to something else.

Got back to the hospitality house about 8:00 again tonight. Ate leftovers.

Monday, 5/11/09

The day started off very early, but seemed O.K. It quickly turned to more frustration. Something that this place doses out in big dollops.

We were at the bone marrow clinic at 6:55 AM. Waited until 8:15 to be called back. Got vitals and spent half an hour with the staff trying to reach a nurse at the clinic across the street to give permission to do the procedure since Pete's platelets were only 13 the day before. We told them that we'd done it with the counts low before with no problem and doctor's orders were no platelets unless there is bleeding. No go. They turned us away.

I went to the Myeloma Clinic office and requested to speak to someone. I spoke to a nurse that I knew, but he would not give approval. I told him we would go get platelets this afternoon. Nope. They won't keep his counts up overnight. The only thing to do is to go at 7:00 AM and then go at 9:00 and have the bone marrow. We went over this several times and there was no budging. He wanted the platelets to be at 50 and I told him that would take the rest of the year. He settled for 20 to give permission for the procedure.

We went to have labs drawn at a special lab draw area that they set up rather than going to the Infusion Center and wait until we aged more. They were busy for the first time ever and we waited over 30 minutes. When it was our turn, they turned us away because they said we had the wrong form!

I went to the main Myeloma office clinic and requested more forms. This is just where I had been. I got one more form. Requested more and copies were made.

Went back to lab and started over. Finally got labs drawn. Just in time to get across the hospital for a chest CT Scan. More waiting and then a 5 minute procedure.

By now it's 11:30 and we are starving. We hadn't eaten yet today. We decided it would be cheaper to go outside the hospital to eat so headed for the car and drove up the street until the phone rang.

It was the same nurse from the clinic again. He said we needed to come back for platelets. I could feel the tension mounting and pulled into a parking lot. I explained that he just told us we couldn't get platelets today because if they went up from 13 they wouldn't hold enough to stay at 20 tomorrow. He said the labs today showed 12 and we must receive them today. One point? Give me a break! I told him we just left there. We went around a few more times and he said that he has to have them. I told him that I'd talk to Pete about it and he could decide. I thought it was absolutely ridiculous.

Pete wanted a grilled cheese and some tomato soup. I knew a little place where we were the other night that had grilled cheeses, but had checked the phone book for some little diner or home-style restaurant that might give him what he wanted. We found a place that said it had been in business since 1919 or something so thought we'd give it a try. Bad choice! It was a cafeteria and we eneded up with a bunch of stuff we didn't even want and then a bill was brought to the table that made me completely lose my appetite. I demanded the manager twice and complained. He said that's the way it is at a cafeteria and we should've known that. I felt completely taken advantage off and we both just lost our appetite. Pete didn't get what he wanted anyhow. The manager eventually took care of the bill and we left without eating.

Pete suggested we just go back to the hospital and get it over with and not go the next morning. What an ordeal that turned into!

We had a newly hired nurse that was very thorough and nice. I suggested that we give 2 units of platelets now since it was already going on 2:00 after our wait in the waiting room. She had to go ask and was told that she wasn't allowed to. We discussed things a little and Pete said we might as well go ahead and get them and some fluid now. He told me he would just skip coming back in the morning.

She got the fluids going and ordered the platelets. I asked for a copy of the labs from earlier today. I noticed immediately that his red count had dropped considerably. I thought it was strange also that yesterday his red count was 10.7 when he's been in the 9's. I had no idea why it went up. But I also noticed yesterday that since we were traveling and Pete didn't have any of his daily orange juice that his potassium had come down to normal.

The red count was now under 8, which meant that he needed a blood transfusion. I thought it odd that the nurse that called us back for the platelets and no one else had noticed this.

The nurse got her supervisor and they decided to do labs again after the platelets finished. We had to wait over an hour for those and they had dropped even further to the 6's! What gives?

They drew another set of labs from a vein rather than from his port. The morning labs were drawn from a vein so we now had two from a vein and one from a port. We had to wait another hour for those results. They ordered a unit of blood.

All in all, his red count had been all over the chart, his white count had dropped in half, and his platelets hadn't come up after the unit of platelets. I was getting really mad by this time and thought someone should look at all this. I didn't know if the Myeloma was doing this or if there was something else wrong with him. I'd never seen his blood work do all these funny things ever. It just didn't set right with me.

Since it was after 6:00, there really wasn't anyone else to call and the head nurse ordered him to go back to our room and come back in the morning by 7:00 and do it all over again. We left at 6:30 PM. A very long day.

We were starved again and went out for Chinese food. Pete's fortune cookie said that his personal life was going to change and he threw it away. Mine said "Something on 4 wheels will soon be a fun investment for you!" Wow! Any of you that know anything about us know how crazy we are about vehicles. I thought this was pretty exciting.

We came back to our room about 8:15 PM and are ready for bed.

I thought we were going to have a day that I could do some work tomorrow and rest, but it doesn't look that way. Clinic first and fart around with labs, platelets, and blood, and then bone marrow biopsy if all goes well followed by a 5:00 MRI.

Doctor on Wednesday.

Sunday, 5/10/09

Today we went to the clinic, which is always a treat here. It's my least favorite place to be. I took a book along and read so it was better. Plus they only treat the serious on weekends so there's not so many patients or staff there to annoy me.

Pete got 2 liters of fluids that he badly needed since he's just not drinking enough. His uric acid was higher than it's been in a long time and he's not currently taking Allopurinol so they gave him an IV to lower it.

Otherwise it was the normal arguing of "no, he doesn't need platelets...check the doctor's orders..." and such.

We came back to the hospitality house and had some soup and chicken nuggets. He was watching some t.v., but he cable went out and he fell asleep.

Tomorrow we have to get up before the chickens and be at the hospital for a 7:00 bone marrow biopsy to see how much more is in his bone marrow. Then we'll have a CT scan of the chest followed by labs and fluids at the clinic.

We're hoping that his missed MRI can be worked in before we see the doctor on Wednesday morning.

Saturday, 5/9/09 - Here's the latest news...

Well, since the last big post, here's what's been going on.

I have spent all of this week as stressed out as I can remember being only since Peter was diagnosed and we received the shocking news. I have cried more than I have cried since then and just at the drop of a hat. The stress has been unbelievable.

Since April 1, I have talked to the head doctor's assistant here in Little Rock and 3 call nurses. One I mainly deal with and two that called me when they had concerns with labs.

Of all four people I talked to, they all said they would check with our doc here in Little Rock and get some orders and contact me. Each week when no one did I would contact them back. And the cycle would continue.

When we saw our new local oncologist a week ago, I relayed this to him. He said that he was sorry that the Velcade wasn't working. He said he understood that we needed to go to Little Rock and that it was difficult to leave home for so long and that we needed to know what we were going for and not just have an open-ended trip. He told us he would go right then and call the doc here and see what he could find out for us. He, also, wasn't able to reach the doctor and could only leave a message.

Meanwhile, Peter's number have been getting worse and he's been feeling more and more washed out and sleeping all the time.

This week I set out to straighten this out once and for all. Our local doctor never did hear from the doc here and I started calling the nurses. No one would answer the phone at UAMS. That happens semi-often. I sent emails. One nurse called me back. I explained that last week I was told that a scheduler would be calling me for appointments, but no one did. I was told by 4 different people that medications should be changed, but they never have been.

Peter was sick and we needed some answers. Meanwhile, on Monday (I hate Monday's), I received a notice from the City of Roanoke that they were going to come down on us the following Monday on some issues that I have not been able to address. I have tried and tried to do the best I could and explain that I am doing so and how bad off Peter is. But it has gone nowhere. Now Peter really must get to Little Rock and while he never did get scheduled last week as promised now if we make an appointment for this week or next the City is going to punish us. What the heck am I supposed to do?!

The nurse gives me a number and tells me to have the doctor here call that number and demand to speak only to the doctor there. I follow through. The doctor tries, but can only leave a message. He stays in constant contact with me.

I feel sorry for our doctor here because he is new to us and we chose him. He hasn't known us in good times. He's come in at the end of the dance. He has the extra stress of trying to coordinate with UAMS and to pass good information to us and give us advice.

The doctor calls me back and said that he was not able to talk to the doctor, but that a nurse called him back instead. He sorry to say that all she could tell him was that since the Velcade obviously isn't working this time that we are down to one solution. That would be super high-dose chemo. And in his weakened condition, his chances of surviving it aren't good.

I asked about the changing of combinations of drugs and he said that as he understood it there wouldn't be any difference. He would have liked to have talked to the doctor, but it seemed impossible. He said the doctor does have his cell number and our local doc will be on vacation, but that he will be available if he chooses to call him.

This was a devastating blow! I spent the next 24 hours on the phone to UAMS and going up the ladder to the City Manager. All I did was answer the phone or answer emails for two days straight.

Also, in the middle of all this I had contacted his attorney to try again to push him along on some issues because Peter may be at the end of his life. He informed me that one issue that he'd been working on had ended and not in Peter's favor. This was going to devastate him. I really didn't want to tell Peter about this.

When I talked to Peter that night, he said that the dance wasn't over until he said it was over and he's not about to give up now. He said we've known that we needed to go back to AR, but that all these other issues just keep popping up and preventing us from doing it. He was determined that we go and face these people in person. He also said that I had done everything in my power to solve the situation with the City and to notify everyone of his serious condition and we should not worry about repercussions.

It was too late at that point to call UAMS, but I planned to do so the next day. I did check email before shutting the computer down and there was an email from the head doc in Little Rock. It basically said that his assistant had told him that we had chosen comfort care and that he was very sorry and it was probably the best and wished us well. What the heck?!

Now I was even more upset and confused as was Peter. We just felt like we were having a bad dream that we couldn't wake up from.

I emailed the doctor back and said that I didn't know how this was determined, but that Peter wanted to fight and was that not still an option? He emailed that we can still fight.

There is no way that I can accurately describe the amount of hell I went through this week over a lot of very poor communication.

The scheduler called to make appointments and said we would need to wait an entire week more for appointments for tests and then wait for the test results and see the doctor the following week. I blew up at her. I told her that a week ago I was told that a scheduler would contact me and no one did. I told her that we'd been screwed with for a month now and my husband was getting worse because of it. I suggested that she check with the doctor because I highly doubted that he would want two more weeks to pass without some intervention.

She called me back and said that if we could be there Friday, she could make things work. Well, that would give me only one day to get things ready and leave, but if that's what it would take, then I was willing to do it.

So this was all happening on Wednesday. I called and made an appointment for the car to be serviced and to get inspected in case we came back next month and would have an expired inspection sticker.

I rushed around and made arrangements with lawn people, pet people, one more notification to the City, friends, social workers for help in lodging, and trying to go outside and batten down everything for what could be a long stay away from home.

I did laundry, refilled prescriptions, packed, and got as ready as I could in such a short time.

All this time I kept breaking into crying spells that this might be a one-way trip, or it might be a last trip and then I would bring him home to die. I kept thinking of things undone. I kept thinking about what I needed to do after I was gone. My brain just wouldn't stop!

Thursday morning I took the car for service and inspection and got it cleaned. I came home and loaded the car and let our neighbors know we were heading out. I wanted Pete to help me tie some things down outside since he is so good at it, but he just didn't have the strength. I did the best I could and then we hit the road. I hadn't eaten all day. We finally left about 1:30-2:00 I think.

We drove just barely west of Nashville. I normally try to make it closer to Little Rock, but I was so exhausted from emotions, working so hard on all the problems of the week, crying so much, and getting us ready to go that I just couldn't push on any further. Peter slept the entire way and just looked pitiful. It sent me into crying spells every little bit.

We stopped for the night and left the next morning just after 9:00. We still had about 325 miles to go and had to be at the clinic at 3:00 that afternoon. Peter was also scheduled for a PET scan at 6:00 so couldn't have anything other than water after noon because he had to fast. So we stopped at one of our favorite restaurants at 10:00 and had a nice breakfast. I wondered if this would be his last meal.

After we got into AR I was really getting tired. Peter seemed a little more alert and said he thought he could drive the last 100 miles. I let him drive and dozed a little. We didn't make it to UAMS until 3:30. We did our best.

I got Peter to the area for his labs to be drawn and ran upstairs to get his paperwork. Then I found out that they didn't have his appointment to be seen as I had been instructed. I also told them I had never heard back from a social worker on a place to stay. I could pay for a night or two at our favorite little inexpensive motel, but would need something soon.

I ran back downstairs just before the lab was closing because it was now 3:50 and they closed at 4:00. Everything was a rush now. He got his labs drawn and I had a couple of calls from the social worker. She was waiting to see what was decided on whether he was going to be admitted to the hospital or not. I told her that they didn't have the appointment on the books for him to be seen. I asked her help to please call the nurse that had told me about this and intervene for me.

We went back upstairs and they had been notified that he was to be seen. They were shutting down so things were really getting critical. They took him to an exam room and took his vitals. His blood pressure was very low, so I knew he was dehydrated. We then waited and had several more calls from the social worker.

She had found us one of the hospitality houses, but it was on a second floor. That was fine. Peter has a hard time with stairs, but it's not impossible. Just slow for him to get up with his lack of leg muscles. It did have Internet access she promised. She insisted that I get checked in before his PET Scan which just wasn't going to be possible.

A doctor came into to see us and we were pleasantly surprised that it was one of the favorite doctors from his time in the hospital. The doctor was confused and said that he thought Peter looked good. None of us could figure out where this information that he was doing so badly came from and the whole "comfort care" thing. The doctor said that they needed to look into it, but for right now was there any reason we could think of why he needed to be admitted to the hospital. We didn't know of anything.

I suggested that he have daily labs and get fluids since he's not drinking enough and he agreed that would be a good idea and set it up.

We went to have the PET Scan and then I went and got us settled into the hospitality house. The test was done about 8:00 PM and of course we were both hungry. We went to a place we'd heard about and were thoroughly enjoyed a great meal.

We went back to the hospitality house and were so exhausted that we fell into our twin beds before even making them. We slept through until noon today!

Pete had some bathroom problems and we ended up having to cancel our 1:00 MRI appointment. We'll have to wait until Monday to see when they can reschedule it. I don't know if it will be before our doctor's appointment. It couldn't be helped though. He had a rough afternoon. He hasn't had problems in quite some time.

Sunday we will go to the clinic and have labs drawn and get some fluids. Monday morning we have a 7:00 AM bone marrow biopsy and then an 11:00 CT Scan of his chest. We will probably still need to go to the clinic for labs and fluids that afternoon and Tuesday. Unless they can schedule the MRI for Monday afternoon or Tuesday, we have Tuesday free. Wednesday we see the doctor at 9:00. We sure hope to have some answers and options then.

I'll report more when we know more. Thank you for all your prayers. The relief we feel is enourmous. We don't expect to have an easy time of it and expect more problems at home due to expenses and legal problems. We don't know how long we'll be here, but we'd guess for a month at least barring complications.

Whatever people are to blame for making me think that this is as good as it gets really don't have any idea how they have played with people. All the things that have constantly been going through my brain for the past several days and all the way here are things that no one should have to think about.

If Peter dies along the way to Little Rock, what do I do? If he dies in Little Rock, do I have him cremated there or return him to Roanoke to have him cremated? Who all do I need to notify when he dies? How long will I have to clean out his storage units and should I trust an auction company? Should I stay in Roanoke or move far away? Should I just sell everything and travel for a year floating around? Should I move somewhere else? How will the pets understand that he's not coming back?

This is the crap that has been in my brain all week. It's no wonder that I couldn't stop crying.

Made it to Little Rock-5/8/09...

Boy do I have some sh*& to post!

Will catch up tonight or tomorrow. Just wanted to report that we made it safely. Pete is having a PET Scan done now.

We're gong to be staying at one of the local hospitality houses, but at least it has wireless access.

More soon, I promise.

More frustrated by the day!

I have really lost my patience with UAMS. I have been in contact with several people there and our doctor here has tried to call with no success. I get lots of opinions and guesses on what the doctor there would do, but no actual orders. It's been over a month now and I'm getting nowhere and Peter's getting worse and worse.

The only consistent thing I can get is "you should be out here" or "get out here as fast as you can".

We have a number of problems that seem to just keep getting worse at home and I can't get anyone to tell me that they won't escalate if we leave. This would already be a huge financial burden to go back to Little Rock and stay for 3-4 weeks as they suggest, but I can't in good conscience leave and cause us huge headaches that can't be solved.

There is no guarantee of what would be done in Little Rock and of course as we know from last September even if they say to stay for a certain amount of time, complications could cause this to extend to who knows how long.

I have no way of knowing if anyone there has talked to the doctor, been unable to get the doctor to sit down and look at this, or anything else.

I have attempted again to contact people related to some of the problems we are facing locally and tried to explain the severity of the situation.

My gut tells me that there will be nothing more that can be done. I hope I'm wrong. Peter says he's not ready to give up and keeps saying that he just needs rest.

Perhaps someone will contact me this afternoon. I'll post more when I know more. Peter is still sleeping and I haven't talked to him about any of today's developments.

It's May already...

I've been negligent in posting and a few people have called me on it. I've really had my hands full with Pete and haven't had a minute to myself.

Last month around Easter Pete received transfusions of platelets and blood and had a new port put in. He finally started receiving Velcade and has been receiving it and a liter of fluids every Monday.

He has been very tired and in a lot of bone pain and it's getting worse and worse. Because of this, he's sleeping almost all the time and taking pain pills. Of course when he sleeps all the time, he isn't awake to be drinking and isn't eating.

I've had conversations with 3 different call nurses and the doctor's assistant at UAMS in Little Rock and each and every one of them have promised to talk to the doctor about this and let me know what to do. Each of them has the opinion that some of his medications need to be increased with the Velcade, but no one has been able to get doctor's orders to do it. I don't even know if any of them have been able to talk to the doctor.

Pete has been trying to work on the lawn mower. Last year it wasn't used at all because at the beginning of the season he fractured his arm and leg and I hired someone to do the lawn all year. We have some other pressing things that simply must be done here on the property as well.

I've had my hands full trying to do some work to make ends meet, cook and do the dishes since he's not feeling like doing either, and try to keep an eye on him and push him to drink more or do this or that.

I had to go out of town for a week and made sure there were plenty of drink choices and easy meals to make. Pete was sure he'd have the lawn done when I returned.

What happened was that he slept almost around the clock that whole week. He also said he didn't have the strength to pull the cord on the lawn mower.

I came home exhausted and feeling very overwhelmed with everything here. I realized then that things are probably not going to get better. I suspect that Pete will never again be the strong person that he was after the first transplant.

I'm not even sure what else we can do for him. I don't think he would make it through another transplant and he can't keep on Velcade, Thalidomide, and Dex forever.

Monday we saw our oncologist here. I explained all this to him. I suggested that instead of me talking to nurses that haven't been able to make changes or tell us what the doctor wants to do, that the doctor should call the doctor directly. He agreed.

He was not surprised when I told him how Peter was feeling. He said that really with the Myeloma activity and all he's been through since he was diagnosed in 2002 that this was just the way it was. He didn't have anything he could do except to make sure he had plenty of pain pills and keep him alive, but that Arkansas was where the answers were and he knew that we knew that and also understood that we just can't afford to stay there or keep going back and forth. We're tapped out all the way around.

Pete got his Velcade. I talked to a nurse at UAMS who told me that Pete's numbers are really climbing showing the the Myeloma is being very aggressive. She said that she would also pass this information to the doctor. In her opinion, the doctor would either say to get our butts there and plan to stay awhile or to make some changes to dosages and give it a few more weeks and see if the meds went after the Myeloma.

Over last weekend we had our best friends ride in on their white horses and transform our yard. They mowed a month's worth of overgrown grass, trimmed, got rid of weeds, and cut down small trees that had formed from weeds.

Pete started to try to help them, but became tired almost immediately. He sat on the porch and dozed off. He slept there most of the afternoon and then after they left he moved to his recliner and slept the rest of the day and evening. He went to bed very early. Sunday he slept around the clock.

We are going to have some tough choices to make. I cannot do everything alone any longer. I am feeling tired and old. I can't get a handle on everything in the house and normal home maintenance that I used to excel in has gone completely by the wayside. Taking care of lawn work, vehicle maintenance, pets, Pete, cooking and dishes, laundry, etc. is more than I can do. I need to face facts that I need to plan accordingly if this is as good as it gets.

I think we need to consider moving even though the thought of packing and moving "stuff" makes me too tired to think about.

I am going to get a mower that I can start and manage myself for right now. If we do have to go to Little Rock for some period I'll have to have the lawn people come anyhow as well as the pet sitters.

The porches need repainting and I've been intending to do it the past two years and haven't been able to do it. The garage roof needs repaired. These are serious matters that I can't keep up with any longer.

As of right now, we are planning on going to our local clinic on Monday. Pete will get Velcade and I'll see if the doctor has any new information.

As soon as I know what our next step is or have some good news to post, I'll do so.