12/29/08---Going Home!

We were shocked to learn that we could go home for a month. Getting last details handled and heading home soon. Will post more from Roanoke.

Friday, 12/26/08

We had a very quiet Christmas. We didn't truly celebrate Christmas. There are Christmas decorations everywhere here in the house and we did talk to family on the phone. But we didn't buy any gifts or send any cards. We just excused ourselves from the holiday this year.

So many people have donated hams and ham dinners to the house here and there are so few of us left behind after so many people have gone home that we can't stand anymore ham! We bought a small roast and put it in the crock pot with potatoes and carrots and onion and seasoning Christmas morning and then went to the clinic for the normal blood draws.

Just as we were about to sit down to Christmas dinner with our only neighbor on the floor, the clinic called and wanted Pete to come back to get platelets. It was frustrating.

We are hoping that our doctor's appointment on Monday can either clarify that this is part of the insanity or that some order can be written to better handle this. We go through this each day now where the platelet count from the day before is low and either they don't do anything about it or don't seem to notice or it's very borderline and the nurses explain to us that their hands are tied and rather than having some flexibility like the 7C clinic did where we went a week ago and being able to give platelets with good judgment this clinic can only give platelets when the count is below 20 and then sometimes they don't. So if the count is 20 and anyone with a brain knows it will go down the next day, they will not give platelets no matter how much I yell and scream.

Today was a test in patience and one that I didn't pass very well. Our appointments at this insane clinic are every day at 11:00. We are there 10-15 minutes in advance every day. Today the waiting room was more packed than we ever have seen it in our short week there. There were only one pair of chairs left at the rear of the room where we sat to wait.

Our normal wait time in any waiting room anywhere in this place is 1 hour. After 1.5 hours I went to the desk because most of the waiting room had emptied and filled again what seemed like without us. The girl at the desk told me that was normal today and that people were waiting for a couple of hours because they were closing early and had called everyone in at once and would not be having people come back later in the day. I found this rather strange being that on Christmas Day and Christmas Eve Day none of this happened and I couldn't understand how the day after Christmas was any more special than those days.

Pete has had a touch of a cold all week and awoke this morning with some new congestion which I treated. He really just wanted to stay in bed and sleep for the day and it was all I could do to convince him to get up and go to the clinic. Now he was napping there, but I was wishing that we hadn't come on time after all.

After almost 2 hours, a girl came and led us to this other area that they refer to as 'Express' and we've only been to a couple of times since they are not open weekends or holidays. She got his vitals and has waited on us before, yet she didn't want to take his temperature under his arm per his request. She finally got some approval that this was O.K. as I had already explained to her that it was. This was also the same girl that waited on us our first day there who demanded to know if I was his nurse when I questioned her blood pressure reading.

We assumed a nurse would be in soon to do labs, but to our surprise this girl was unwinding a bandage and I explained that he would not need that for anything. She told me it wasn't a bandage but a pressure dressing for when she stuck him. Stuck him? Why would anyone stick him when he has a port and a port that must be flushed there each day and why would a nursing assistant or whatever she was that only took vitals be trying to stick him anyhow?

She explained that in order to get people out faster, they were sticking people instead of using the port. How insane! I told her that she was not about to stick him when he had a port and she told me in a very threatening tone that if we didn't allow this he would have to go back to the waiting room and wait a very long time. How dare she threaten us!

I responded that perhaps we would just go back home where Peter could get some much needed rest and they could call us to come back when they had their act together an were ready for us. That may not have been the best thing to say, but it's exactly what I was thinking and feeling.

We returned to the waiting room and in only about 5 minutes the same twit came to summon us into the main clinic room and to a chair where a nurse would help us.

They were insanely busy and we waited about 40 minutes before the nurse came to draw labs. She didn't have our lab results printed from the day before, but when she looked at the computer she said that his magnesium was low yesterday and wanted to know if they'd given him any. I told her no one had mentioned this and that we'd been called back for platelets but that was it. So, there again, they should've given magnesium yesterday and didn't. Perhaps the nurse just didn't want to be bothered. Who knows?

She insisted that we wait and told us she would put a STAT on the labs from today and see if he needed platelets and magnesium. Well, the STAT didn't make any difference and almost seemed to delay the results. After an additional hour and a half we were still waiting and she was getting upset at the lab.

Finally about 3:00 she told us that Peter did need platelets and magnesium and ordered these. By the time they arrived and he received them, we were leaving there at 5:00. We were exhausted. My back was killing me as the only thing I had to sit on for all those hours was a small stool with no back and I had a headache from the fluorescent lights.

What a long, tiring day. We are anxious to see the doctor on Monday and hoping there won't be a long wait to see him. We have lab visits on Saturday and Sunday.

Tuesday, 12/23/08

Pete's numbers seem to be holding low, but steady which is a good sign.

We did labs yesterday and today did labs and an MRI in North Little Rock at a private facility. We had lunch at the NYPD Deli where we had the most perfect Italian sausage sandwiches that you could ever imagine.

Yesterday the weather was 12-14 degrees around the area. Today it was hanging around 32 degrees and raining. The car had a thin layer of ice on it.

Tomorrow is Christmas Eve and we have an MRI and labs. We'll have labs on Christmas too as no day can be missed.

The UAMS Family House is almost completely empty. We have befriended a very nice lady from Oklahoma City and she will be the only other one here with us. Everyone else has been given permission to leave for the holidays.

The House has had an unbelievable amount of food donated over the past two weeks. We're still working on a ham, green beans, cheese grits from a week ago and someone else has donated everything for a nice ham dinner. We are up to our eye balls on ham right now so have opted to freeze the ham and have a roast with potatoes and carrots in the crock pot instead.

There are tons of sweets available every day. They are all so good! We may never want to leave if they keep feeding us like this. We never have to cook. I'm sure this will all come to an end once the holiday season is over.

Wishing everyone a very Merry Christmas!

Sunday, 12/21/08---Our heads are spinning

I know I promised to report on our visit with Dr. B on Friday, but we are just coming to a point where we are not dizzy from all that has happened in the last few days to be able to do so.

We got up early on Friday to see Dr. B at 8:00 AM. We had a little trouble finding the building since it's on the other side of the campus from where we've been going. We did make a dry run the night before, but in the dark and with some one way streets we just couldn't quite get to the right place. We were almost late so we decided to valet park the car instead of finding our way from the parking garage with a wheel chair. We were signed in at 7:50 AM and ready to see the doctor. We skipped breakfast to be able to get there on time and figuring that we could have something to eat after our appointment and before we went to the clinic for labs.

The day began with the receptionist not having any record of us. She asked several people and I assured her that not only was I called two days ago from the office with the appointment and had written it down and repeated it back, but that the outpatient clinic had also reminded us of it the day before.

After some time, she informed us that our appointment was at 9:30. I explained all again and she was very set that it was at 9:30. I didn't buy it, but what could we do? I did ask if we would have to wait until 9:30 or if they worked on a first come first serve basis. She told me that we would be seen just as soon as a room was available. Since there was only one other couple there in the waiting room, we were sure that we'd get put in a room since we were number 2 on the list of arrivals. It's a good thing that we didn't put any money on that bet!

We sat there while the waiting room changed over with people three times! At 10:30 I did inquire again and was told that they were short-handed. That still didn't make sense since we were there ahead of all these people.

We watched food come in that looked delicious and get wheeled to the employee break room. We were really getting hungry. There wasn't any milk or juice in the refrigerator, only Ensure.

Finally after 11:00 we were called back, but only to have vitals and weight taken and then sent back to the waiting room. We sat until almost noon and finally got to an exam room where we met a nice, young P.A. (Physician's Assistant) that has only been working there for 2 months after graduation. He went over paperwork and files, asked us questions, printed off reports, and organized papers for Dr. B. He also examined Peter.

He left twice to go find the doctor who kept going into other rooms to see other patients. Finally we got to meet him. The doctor spent a lot of time going over the papers and looking for other information that the young man had not provided him. Then we wanted to know where the MRI results were. We explained that Peter had not had one. We explained that when we first came someone made the mistake of taking him from one test to the MRI without having Ativan first and he couldn't take the pain of the vibration and felt as if he wouldn't fit in the tube. The doctors had told Peter that it would be O.K. without one and Peter said he didn't want to go through that again unless they had a bigger one and could knock him out.

Dr. B. got nose to nose with Peter and stated that "Bart needs you to have this test because it is very important and will tell more about where the disease is than the PET Scan" and then asked him if he would do that for him. Peter agreed. The doctor then got on the speaker phone to his assistant nurse and demanded that she get an open MRI scheduled for Saturday for him.

A little more shuffling of papers and he wanted a new PET Scan too since the last one was early in November and he was calling to order that too also for Saturday.

Then he wanted to know about the gene array. This has been done each time Peter has had a bone marrow biopsy to be able to tell which chromosomes or genes are abnormal. As the doctor discovered, the first one he had showed 70 genes affected I believe. After the first chemo, there were 19 abnormal genes and 1 normal gene. The last gene array did not have any results returned even though that was 12/8. The P.A. stated that this test was normal and that he had called. The doctor had him call again and was told it was all normal.

Dr. B. didn't buy this because he said there is no way that the bone marrow biopsy could show 30% of Myeloma in the bone marrow and have completely normal genes. He said the test must be wrong. He called someone over that department and started asking a lot of questions and getting some other information. The gene array before the last one back in November actually didn't have enough of a sample or a good enough sample for any results so that didn't help. So, he scheduled for Peter to have a bone marrow biopsy repeated that afternoon and the gene array repeated and demanded the results before Christmas!

The P.A. left and the doctor used the speaker phone to record dictation for several minutes. He never did really talk to us, but it was almost as if he expected that between listening to everything that he was doing that we would understand, which we more or less did.

Before we knew it he was leaving. He told Peter that we shouldn't plan on going anywhere anytime soon and that he had a really good response from 95% Myeloma when we came to 30% after transplant. He said that we needed to let him get him into full remission and almost said to do whatever he asked. He put a hand on each side of Peter's face and got nose to nose with him again and I thought he was going to kiss Peter on the lips, but he just looked him in the eyes and gave him a few words and he was out the door before we came out of the trance. We just looked at each other not even knowing what just happened.

Several minutes later a nurse entered the room and told us that she would be handling scheduling. She left and returned and ushered us into another room with a table and chairs where we waited for about 15-20 minutes. It was already 1:00 and we were starving. We planned to go to I-HOP for some brunch immediately. But before we knew it another person was in the room telling us that we were going for a bone marrow biopsy, gene array, and PET Scan.

I explained to this lady that we had been there since 7:50 and up since 7:00 with nothing to eat all day and that we needed to go get something. She told us that Peter couldn't eat since he was having a PET Scan and no food or drink was allowed 6 hours before that. I questioned this since the doctor had ordered this and the MRI for Saturday. She told us that no one would be able to do the test on Saturday because they didn't work on Saturday. She said they couldn't do the bone marrow biopsy or gene array either on Saturday. She said we had to go that very minute to get bone marrow done.

We were in an area where we had never been, had no knowledge of where any of these places were to get these tests, and no experience doing any of this as outpatient. It seems that we have to keep reminding people of this and when we do it's almost as if they don't believe us. It gets very tiring.

I wrote out almost a page of directions to get to the other building where the bone marrow lab was, which was a couple of buildings away. We lucked out in that someone was going that direction for an errand and walked with us to show us the way. We would have never found it and of course this person didn't go at all the way the directions listed anyhow.

The waiting room was small so we were told to go into a second waiting room since Peter was in a wheel chair and there was no room for this. Just after we got there they called me to the phone at the reception desk. There was a girl on the other end of the phone that told me they could do the PET Scan at 4:30 and we needed to be there at 4:00 and needed come all the way back to the clinic to get papers and appointments. Based on the time, I told this girl that there was no way we could get done with the bone marrow and gene array in time to come over there.

I think it was about 1:30 when we arrived at the bone marrow office and between 1:30 and 3:00 there were no less than three calls to the office from this girl pushing them to rush us in and the same number of calls to me to see if we were in yet! It was unbelievable and embarrassing. The final time she called she was really upset because she understood we were already in the test and we were in fact sound asleep in the waiting room about 3:00.

When we did get called in, they didn't know we were in the other waiting room and had trouble finding us. They commented that they worked us in and that if this girl hadn't been calling over and over again they could've gotten to us much faster.

When I explained that because of Peter's low platelets and previous hematoma that he must have 10 minutes of pressure and then 10 minutes of ice they very quickly and rudely told me that they didn't do that. I explained the problems in the past and how important it was and it made no difference. I was already tired and hungry and their attitude was not setting well with me. I didn't want to be on my own with Peter and have to deal with a hematoma. I told them that it needed to be done this way or not at all and they started to show me the door and stated that it just wouldn't be done at all! I couldn't believe that they had that little regard for patients. I could understand that they were rushed, but this was really ridiculous in my opinion.

We did the bone marrow biopsy and gene array without any pain or anxiety medication that he'd had as an inpatient. He did very well and they got a lot of samples that I hope will give them good results. They said that the wrong test was probably because of being done too close to chemo given.

I expected the impatient girl to call back with information on the PET Scan, but when we got done with these it was already almost 4:30 and we hadn't heard from her. The rest of the bone marrow office was closed with all patients and staff gone and it was dark. I requested help in contacting her even though I didn't know her name. The nurse that did the gene array was super nice and went to a lot of trouble to find someone at the clinic that told us to go on to PET Scan.

We lucked out again with someone from the lab going that general direction and was able to lead us through the maze to the main hospital building for this test.

Not long after signing in we were taken to another waiting room and it wasn't long until Peter was taken back. I was told it would be a couple of hours for the test. I went to the cafeteria and bought some cookies and drinks so I could have something and so that Peter would have something as soon as he came out of this test.

While in the cafeteria the girl called again and stated that we needed to come back to the clinic. I have no idea how many miles back this was, but I was exhausted and knew that Pete was too. She stated that I needed to pick up our schedules. I asked if she could email them to me, but she could not. I told her that it was almost 5:00 and that Peter just went back for the test and it would be two hours. She said that she would be leaving, but the nurse would be there until 8:00 and gave me her name. I asked for the number to call and she couldn't give me one since the office would be closed. She told me what she would have together for me in a packet. Sigh.

After the PET Scan Peter was eager to eat the cookies and down the Coke I bought for him. He still wanted to go to IHOP. It was all I could do to wheel him the distance of the three buildings to get back to the clinic.

Of course it was closed and no receptionist was there. I went down hallways yelling for any sign of human life and finally found someone who was not the nurse I was looking for and expecting. I requested the nurse I was to see and instead she brought me some forms. She wanted us to sign a consent for a long list of chemo. Hold your horses! We didn't talk about any chemo and we are not going to sign any consent. She was sure that the doctor must have talked to us about this. No, he didn't. So she went back and then returned with another form for Velcade. This is the drug that Peter has taken all year and for a couple of years in the past. It was for a 'sample dose' on Saturday. I signed that and she handed me a schedule with a few line items highlighted.

I asked about the MRI and doctor's appointment and she told me I would have to call on Monday for that. This didn't make good sense since this girl that called me over and over made such a big deal about how she had all this scheduled, had printed a map, had phone numbers, and how important it was for us to pick this up tonight.

We then asked for help in getting our car since the valet parking had closed. Another nurse called the UAMS Police and they met us at our car and returned our keys to us. We were ready to drop and to get the heck out of there. It was already 7:40.

We were only a couple of blocks from the hospital when my cell phone rang. It was the nurse that had called the police for us. She said we left some papers there. No, we had them right there in my notebook. It was the schedule and the phone number to call about the other appointments. We went back and forth several times and I assured her that it was right there with me and even double-checked. She was insistent that we left forms behind and told us that they would drop them off tonight for us at the UAMS Family House where we were staying.

We went on to IHOP and unwound. We had a nice meal, Peter's first meal out since being released from the hospital. We just sat and relaxed in disbelief at this unbelievable day.

When we returned to the house, the office was closed and there was nothing there for us or left under our door. We didn't worry about it.

One of the questions on the schedule we had was that instead of going to the outpatient clinic where we had been going, though we missed Friday because of all that happened, that we were to report to another clinic for labs.

We went to this other clinic on Saturday and it was very, very different from what we had experienced so far.

The girl that was assigned the task of taking Peter his vitals just about had me knock her block off. :) When she took the blood pressure and it came out to 50/30 and I commented that there was no way that was right, she looked at me and asked me if I was his nurse! I saw red and it wasn't my hair.

It turns out that they draw labs, but don't have you wait for them but have you leave and call you to come back if there is anything you need. When I commented that we would surely need platelets because they had been staying in the 20's they stated that unless they dropped under 20 they don't give platelets.

We then asked for his dressing over his port to be changed and that seemed like a lot to ask. It had been over a week and needed to be changed. The nurse assigned the task to this smart-mouth girl that I had already wanted to deck.

She had never seen a port like that in her young career and had never done a dressing like that. She tried and ended up getting the dressing all stuck in her gloves and had to throw it all away. She then got someone else to watch that didn't have anymore experience than her and together they made a real botched job. They took a big wad of tape and bunched it up over the top like a kid trying to wrap a present. By the time we got home it was already coming apart.

We tried to ask our nurse if she had any idea why we were coming to this clinic and she had no idea and didn't really know what the other clinic did. We figured we'd just come for the weekend and then call on Monday and see whether this was done just out of habit by a schedule person or if there was a reason. Perhaps someone didn't know that we'd been going to the other clinic.

We drove around Saturday afternoon for something to do, visited a surplus store, and then returned home that evening. An envelope was slid under our door with the mysterious map to the MRI facility and another schedule for the MRI and the doctor's appointment for a week after we were told we would have one. It also had us going to our old clinic on Saturday afternoon, but it was received too late.

Sunday we returned to the new clinic for labs and requested a dressing change again. You would have thought we were asking for a boil on a hobo's butt to be lanced! The nurse was not happy about it and took it out on Peter. She ripped the tape and dressing off and he was in pain. She pushed the swabs and such to clean it all around pulling on his port and really hurting him. She didn't speak at all and you could tell she was ticked. It was as if they didn't want to do any work.

She did a worse job than the girl and ended up with the tubes sticking 90 degrees out of his neck! It was totally ridiculous and unprofessional.

Monday we are scheduled for another gene array at 10:00 and then labs. I'll try to find out about the clinic situation and the difference in the doctors appointment.

It looks like he will have half an MRI on 12/23 and half on Christmas Eve. It will not be at UAMS and I don't know how well he'll tolerate it.

It's been a wild few days as you can see. We don't know what to expect next!

Thursday, 12/18/08--Pete and Santa

We had a surprise today when I dropped Pete off at the door where wheel chairs are. Santa was there!

For the past three days his counts have been dropping. His kidneys are getting better, but his white, red, and platelets are dropping. He was well into the normal range just a few days ago, but even with the growth factor shots his white count started dropping. He's not sick and has since dropped the growth factor. Insurance has officially denied collection of stem cells for the purpose of storing for possible future use so there is no need for growth factor shots now.

The APN nurse that handles our case in the clinic said that he may bottom out in a few days and then start climbing. Tomorrow it will be one month since his stem cell transplant and we would expect his counts to have recovered by now. Perhaps the growth shots were giving us false information. Perhaps he needs more stem cells or something else to spur the growth.

Tomorrow morning we have secured an 8:00 AM audience with the big man himself, Dr. B. We are very anxious and even though we will have to get up super early to make this appointment and may not be able to sleep tonight, we are very anxious to hear what he has to say.

Pete wants badly to be able to go home even if just for a few weeks. He misses home, our bed, our pets, and all things familiar. I'm sure that his numbers will need to stabilize more before that is possible. His external port will need to be removed first as well. But we'll see what he has to say and report when we can tomorrow on the status.

Tuesday, 12/16/08

A lot has happened since Saturday, but it's very difficult to make posts in our 'new home'.

We did discover on Sunday through some discussion with a nice Marine that is staying here to care for his mother, just diagnosed with Myeloma that the house here does have Internet access. The main 'house mother' here is an elderly lady that is perfectly suited to the job but who doesn't know anything about computers or the Internet. So she just says that there is Internet access and says that a computer can be hooked up next to the phone line. There are no cables or information to provide further information and the phone jack is behind a night stand between the two twin beds.

As it turns out, a CAT5 network cable is needed. I have plenty at home, but don't carry one with me since most places have wireless access and when I do stay at a hotel that has a hard-wired connection it is always provided from a hub on a desk. This nice man loaned me a cable and sure enough I was able to turn off my wireless access and connect to the Internet. The cable is short and there is no desk or area to work so it is limited in use. It's much easier to just go to the library downstairs and use one of the two computers there to check email.

Sunday, Peter was pretty tired because he had overdone it walking and trying to do as much as possible on Saturday. Sunday at the clinic he did need platelets and magnesium. Had he still been a patient in the hospital, he would not have been given magnesium because the range considered to be normal was different. All hospitals, clinics, and doctor's offices have their own ranges for blood levels on what they consider normal. Strange, I know, but we've experienced this before. Still, we thought that at least the same hospital would be the same and since we were on the same floor as where he was an inpatient.

They recommended Magnesium supplements, so I bought some and will give him every other night. Eating some greens, legumes, nuts, peanut butter, milk, whole grains, and wheat germ all help with this, but Pete doesn't eat enough of anything right now to get much in the way of nutrients. Magnesium is important for bone health.

Saturday they said his potassium was on the borderline of low and suggested he eat bananas and drink orange juice. He does drink orange juice every morning like clockwork. He's been warned against taking in too much potassium by the kidney doctors because high potassium is very bad for the heart and he's had some high potassium and required dialysis for it. So now we're going the other direction. I did buy some bananas, but he wasn't able to eat more than a bite and had his normal o.j. in the morning, but his potassium was fine on Sunday. Go figure.

We discovered that even though this place was built for patients, it does not have any aids in the bathrooms and is not set up for anyone such as Pete with limited strength. For some reason all the toilets I've seen in Arkansas are super low. I'm not sure if that's a building code standard here or if they had a run on short people toilets, but they are really hard to get on and off because they are so close to the floor.

We feared this since there is not a raised toilet in our room and no grab bars of any kind by the toilet or in the shower. It's a danger. We soon learned that there was no way that Pete could get off the toilet with his weakened legs and taking a shower was tricky since the side of the tub was very high to step over and there are no kinds of grab bars for safety of any kind. So after our clinic appointment on Sunday we went to Wal-Mart and I bought a raised toilet seat that fits on top of the existing toilet. Big help. Showering is still a danger, but we manage.

Monday was a very different experience at the clinic for our daily appointment. The people at the desk and in general were much friendlier. Over the weekend the staff that was on duty was just short of being rude and appeared to have no compassion over us being new there. They told us they didn't keep pillows for patients to put behind their necks or backs for support as Peter requires and when I asked for a blanket they just told me to get one out of the linen closet with no assistance at all in finding this. There was also no assistance in finding their nutrition room to get Peter a drink. It's too bad we didn't start on a week day coming to the clinic.

We were assigned an APN Nurse who was really a dream. We discussed the issue of collection of stem cells and explained the contaminated ones that had already been collected and what might happen in the future. She emailed several people including the big Dr. B. on our behalf. It was nice to have someone DO something for us and have what really appeared to be an interest in Peter's care and well being. It's not that the nurses when he was an inpatient didn't care about him, most of them didn't take up any fight for him. That was all up to me.

They said his counts were fine again and we were free to leave. It seems good that in our short time out he has only been needing platelets every other day instead of every day now. His white and red counts were good and his kidney levels were gradually coming down nicely.

The APN wanted me to call the insurance company and ask some questions and give her a call back with anything I learned and Little Rock was preparing for some icy winter weather so we decided to just come back to the house and stay put.

Pete went to the library and searched eBay on the computer there while I made phone calls and did laundry for the afternoon. I learned a lot from a very nice insurance lady.

As a general rule, Medicare will pay for a stem cell transplant and will pay again when there is a relapse as there was with Pete a year ago now. They only pay for collection and infusion of stem cells for that transplant. They do not pay for extra stem cells to be collected or for storage of those. When he had his first transplant in Richmond, they only collected what he needed. Everyone we've talked to since then seemed to give us the impression that doing that was irresponsible in some way.

We were already told when we arrived here that they wanted to collect as close as 20 million stem cells as possible to have enough for this transplant and any future ones. Pete collected about 11 million we are told. They really didn't expect him to collect nearly that many because of the previous transplant, treatments, and level of the disease. But it doesn't do any good because all but the ones collected the first day are contaminated with bacteria.

We were told that a request was made to our insurance company to collect again. I learned several things about this between yesterday and today.

UAMS did not request originally to collect and store. That is considered 'investigational' by the insurance company. So we don't know how or why they did collect and are storing what they have. We fear they may try to bill us some huge amount for this now that we know that it was not covered and was not requested.

We also learned that this request was only made on Thursday and the insurance lady (using the term loosely) here has been bugging them each day. The insurance company asked me how long we had known about this. We talked about it some time ago, but only learned that Dr. B gave the go ahead on Thursday when rounds were made. The insurance company was not very happy with UAMS because they already had advised them that they needed to make requests in advance and this took a minimum of five business days and they were wanting the answer the next day. Right now the decision is with a group of doctors with the insurance company for them to determine if it is necessary, but it is doubtful that it will be approved since they don't approve tandem transplants and don't approve collection of extra stem cells for storage for future use.

The research they rely on shows no benefit of having a second auto transplant after relapse or tandem transplants. They show that it is more benefit to have an allo transplant with donor's stem cells after a relapse. So, until research can prove any benefit to using extra stem cells for a future relapse or doing tandem transplants, it is not going to be covered.

Dr. B responded to the APN to refer this to the doctor over the stem cell area, who didn't even know that the cells were contaminated. The APN was really good about going back through and finding the results and sending to the doctor.

Interestingly enough, we learned that that only bacteria that was in the collected stem cells was achromobacter. The achromobacter bacteria is the only bacteria that was found in his original port from 2002 that they finally removed in November.

This is interesting as well as frustrating. When Peter first started getting symptoms of viruses on October 4, the Fellow Dr. that was assigned to us wanted to remove that port and his external one and treat him with antibiotics. The head director doctor was against this. Yet, a month later this same head doctor was suggesting that we remove this port. When it was removed the first part of November, the only bacteria that it tested positive for was achromobacter. So, had they removed it first we could have avoided a lot of pain and misery for Peter and not be in this position of having infected cells.

Also, yesterday we met another couple that had insurance problems with the same lady. They relayed a story about how they did all the work and provided her with the exact information she needed to submit insurance information for them and she didn't follow it. It sounded exactly like what happened when we came here. The lady didn't submit anything as I laid it out was needed and the insurance company had to make an exception because she didn't file it in the 30 days time and didn't provide what they needed. Yet employees here talk her up big time that she just does such a wonderful job. I beg to differ and it sounds like several other people do too. This is the second time for us.

So we have learned a lot not only about insurance but about the real story of the stem cells. The only thing we don't know is what is to happen next and when we can go home. The APN mentioned today that with so much confusion, that she was going to see if we could get an appointment to see the big Dr. B. I told her that would be wonderful because we had been asking for some time to see him and our requests seemed to fall on deaf ears. We felt that it was disrespectful for him to talk about us outside our door and not come in and talk to us face to face and discuss what's going on. And it was him that insisted on collection before the infections were gone.

Today Pete's platelets had dropped out again back down to 17 and his white count had dropped too for some unknown reason. So he got platelets and a growth factor shot and we were free to go for the day.

Last night and into today, Little Rock had an ice storm. Because this is a house run on donations I guess, there was no treatment on the parking lot. I went out early to prepare the car to take Pete to the clinic. I thought I would never make it to the car since the parking lot was nothing but ice and with a slight downhill slope. When I got to the car, the locks were frozen. At home I never lock the car when there is going to be bad weather. Years ago, I used to carry lock deicer with me. I finally managed to get the passenger door open and crawl across to start the car. It made for a more exhausting than normal day.


As it is, I have to go to the discharge door to get a wheel chair for Pete and then wheel him inside to a place out of the cold before going to park the car and then walking back to get him to go to where we would've come in anyhow and go up to the clinic. Then I reverse the entire procedure at the end of our clinic visit.

Today we also had an added chore because we were given a jug for weekly urine sample and returned it with us, but were informed that we were not to bring it there. Once again, we are getting information in dribs and drabs. They could have told us that yesterday when they gave it to us. I guess they 'assume' that we would know that.

We came back to the house and had some soup and hot tea and then Pete took a nap for the rest of the day. He stayed asleep for the night.

We'll see what new things we learn the rest of this week.

Saturday, 12/13/08---First Day as Outpatient

We started getting discharged mid-day on Friday but didn't actually leave the hospital until 6:00 PM. We had some hold-ups, but had a lot of good fortune.

We were fortunate enough to have a very hard-working social worker get us a room at the sought after UAMS Family House right across the street from the hospital. It is a new, clean, and quiet facility.

We had some caring acts by hospital personnel including meal tickets to the cafeteria to use while we are at the Outpatient Clinic and having expenses paid at the UAMS Family House.

We had some confusion on the prescriptions that we were to receive upon discharge. They didn't write a lot of prescriptions. The nurse sent me to the pharmacy which was in another building and quite a ways away from our hospital room. I was not treated very well over there and didn't know that it was a retail pharmacy and was told one of the prescriptions was over $500! I had no way to pay for this and hadn't even taken my purse with me.

Our nurse was new and she understood that they would be put on our bill. She got the social worker involved again and she consulted with the doctor. We already had Peter's normal blood pressure medicine and pain killers. We really only needed one prescription and an over the counter medicine in case he receive blood products as an outpatient. The Marinol (marijuana tablets) was the $500+ prescription. They narrowed the list down more and we were informed that social services would cover the prescriptions. They gave us duplicates of the ones we already had just so we'd have a good supply.

We are very thankful and grateful of this extraordinary generosity.

It was already dark and cold when we left the hospital and Peter was surprised at how cold it was out in the 'real world'. He wanted to drive around a little and just relax. I stopped by the post office for mail, got some air in a tire we have with a slow leak, and then went through a drive-through for Mexican food that he was craving. By a miracle again, our check engine light went out on it's own before Pete got to the car. So now we just need to get our tire repaired at some point.

We took the food back to the house and ate it in the kitchen. It was outstanding. He was loving the food and the jalapeno peppers.

We watched a little t.v. in our bedroom and then went to bed by 10:00. We only have twin beds so snuggling together was out of the question, but it was nice to have a dark and quiet place to sleep that we could have as cool as we wanted with no interruptions. Pete only got up once 'for nature' and then slept until I woke him up at 9:30. He had no trouble sleeping at all.

We got ready for our first appointment in the Outpatient Clinic. We had some breakfast in the kitchen and then drove across the street and parked.

I had intended that Pete would need a wheel chair just to get from the car to the hospital and then could walk the short distance to the elevator and to the clinic. We were very fortunate that the Head Nurse of our floor yesterday showed us where the clinic was and told us what to expect.

The clinic is on the 7th floor like the inpatient unit where Pete has been a patient for just shy of 3 months. We will have daily visits to have his vitals taken and blood drawn. Then they will give him whatever he needs to get his blood levels even. Once his blood levels hold their own, we will be given an appointment with Dr. B at another outpatient clinic across the street. We will then meet with the big man and he will tell us what maintenance therapy he recommends for us and will be the one to give us the O.K. to go home and instructions for coming back or follow up of any kind.

Besides all of this, they are still waiting for approval or denial from the insurance company on collecting stem cells again to replace the ones we were so against them collecting due to infections. If they get approval, they will increase growth factor shots and he will probably spend a week getting stem cells collected for 4 hours a day.

Today Pete wanted to walk from the car. He walked across the parking lot and almost to the hospital, but there was a long ramp that he just couldn't make. I got a wheelchair and took him the rest of the way.

We were expecting some kind of special treatment on our first day as far as introductions, information on what we were to do, or something informative and helpful since we had not been here before. In too many cases, like today, people that work at these places know everything and there are patients that have been there a long time that know, but that doesn't mean that you enter the clinic 'knowing all'.

I stood forever trying to let someone know we were there. A patient finally told me to sign in. There was no information that was obvious about signing in and I still stood there waiting for someone to show me and for me to explain who we were and that we were knew. I was told to wait in the waiting room, but no one showed us where that was and there was no sign. I think I must have been trying the person at the desk.

We were thrilled that our favorite nurse from the inpatient side came and visited with us and brought us some items from our bulletin board that we completely forgot. We also met another couple briefly in the waiting room.

Some of the nursing assistants that work in the clinic are people that we have met on the inpatient side which was very nice. Some people work in both places. Pete had his vitals taken and I had papers for the nurse. She didn't need them after all and asked some questions about what I understood we were there for. We figured at the very least he would need platelets since he's needed those every single day without fail.

They drew labs and then put us in a room that holds two patients with recliner chairs and seating for caregivers. We shared the room with a nice woman that was about 10 years younger than I was an her mother. The younger woman was the patient, which was very surprising.

We were there a total of 3 hours. We had a big surprise in that Pete's labs were so good he didn't need anything! We joked that it must have been the jalapenos from the night before. His red count had been around 8 yesterday and he wasn't given any blood yesterday. But today it was 9.9! His white count was now in the normal range! His platelets have been in the upper teens to around 20 every day and he's had to have platelets, but today they were 28 all by themselves! This was absolutely amazing. The low level for platelets for him is 30, but that was close enough that it wasn't worth giving him any. He got a growth factor shot and we were free to leave.

Because we don't have Internet access in our room as first suggested, I wanted to check our email so we went to the library. Pete used the time to look through the phone book and write down military surplus stores and gun dealers to visit in upcoming days. We can plug the addresses in our GPS and have a different adventure each day after our time at the clinic.

We drove to where one was in downtown Little Rock, but it was very big looking. Since Pete had done a lot of walking at the hospital and the library and more than I even expected, I suggested that he may not want to push it and walk through there. We could do that one day next week. He agreed. We went by the grocery store for a few items to stock in our part of the community kitchen and then went back to the house.

Pete was pretty tired by then and it was 4:40 so he decided to take a nap. I attempted to wake him at 7:30 when we had the pleasure of meeting a nice mother and son that offered us some spaghetti that they just made, but he was too exhausted. I let him sleep while I ate dinner and did some laundry.

Tomorrow we'll make the trek across the street and see how labs look. Then he'll get whatever he needs and we'll drive around a little more and return to the house. They said his potassium was borderline so I bought some bananas and orange juice to boost that a little.

There is a computer in a library here at the house so I was able to make this post. It won't help me much in doing my much-needed work online with training, but at least I can check email or make a blog post.

We're off to a very good start.

Friday, 12/12/08---Discharge from hospital

We are being discharged today and will be living across the street from the hospital at the UAMS Family Home. Will post more after we get moved and settled.

Thursday, 12/11/08---Things are moving fast

Doctor said Peter can be released as far as he's concerned and thinks it would be a benefit to prevent him from further infections, have him moving more, and get us more rest and better meals than living in the hospital. I agree, but we are really scared and stressed.

They are waiting to see if insurance would approve another collection, which they would do as outpatient. The chemo and transplant took the Myeloma down from 95% to 30%. Since they collected stem cells against our wishes and collected infected ones that we were afraid would happen, the doctors all agree that receiving more growth factor and collecting even a little bit more would be a good insurance policy for any future needs. It does not sound as if there are any plans to do a tandem transplant, but to do maintenance therapy. Maintenance therapy is what we didn't receive when he had the transplant in Richmond in 2006 because Richmond believed research didn't show that it made any difference or enough of a difference.

We would need to live in Little Rock on an outpatient basis for a month or two. We don't have a definite answer and I'm sure it would be impossible to have a crystal ball to tell that since it will be dependent on how he does.

Currently he is receiving platelets every day because platelets will be the last to come back. He receives blood every few days. He may need magnesium or something else each day until his body levels out in the weeks to come and of course will need whatever maintenance drugs Dr. comes up with as the best course of action based on his genes. The maintenance therapy I believe can be continued at our clinic at home, but my best guess is that we won't get to that point until his body has returned all his blood levels to a 'normal' state where he won't need any additional 'additives' from the outpatient clinic here.

We are just worried about funding to live for more time here. When we originally came, we were told that we should expect to be here for about 3 months. We've been here 3 months almost but it's been because of complications during the hospital stay that have really dragged things out longer than expected. While we haven't had to pay for housing here, we have had to pay a pet sitter/house sitter every week at home and keep up all our normal expenses at home as well as do laundry and other things here. Now, the real expenses will add up with housing, food, gas, prescriptions, etc. I just don't know where it's going to come from right now and we need it right this minute or in the next few days. It's also the time of year when all our insurances are due and some other annual expenses.

I'll post more information as it comes along. Right now things are just moving faster than we ever imagined, but it's because of good things.

Wednesday, 12/10/08--More Good News

Pete's white blood count took a big jump today to 1.23. His kidney numbers have remained level for almost two weeks now, but today made a noticeable improvement. Just lots of good news.

We feel confident that revising the drugs that he's been on has been the biggest part of this change. Pete says that he feels better. Today he's been up all day with no naps. He hasn't eaten as much, but has worked out twice today with PT walking and doing exercises.

Tomorrow is Thursday and it will be the day of rounds with Dr. B. I wonder if he may come in and see us this time?

Our Dr. told us that Dr. B will determine some of 'our plan' as far as what maintenance drugs to use, for how long, any other treatments needed, when to be discharged, and how long we'll need to stay in Little Rock on an outpatient basis. Now we are anxious to know this information.

It's been a very good day and it's good to have the 'real' Peter back again and not a facsimile.

Tuesday, 12/9/08

Today was a good day!

White counts came up more. This was the first day of our new 'plan'.

Pete did not have any drugs to make him sleepy. We got to sleep in actually due to a nice nurse until 9:30 because we didn't have anything pressing after the vitals that are taken at shift change between 6:30 and 7:30 AM.

We washed up, used the bathroom, got dressed, and Pete sat up in the chair from about 9:30 until 2:00 without dozing off at all. He was tired. He didn't sleep terribly well, but I wouldn't let him have anything to help him sleep. We just played our thrift store radio all night on classical music to relax him naturally.

As the day went on, he ate more and more. He's getting the munchies every little bit. Some of what he's eaten today has been a donut, coffee, juice, Reese's peanut butter Christmas tree, peanut butter cookie, pretzels, some bites of mixed fruit, some bottled iced tea, and about 1/4 of his dinner.

He had a chest X-ray today as a precaution, saw the dietitian, and walked out in the hall with his physical therapist.

He had far less pills to take and was much more alert. He's hurting a little bit tonight from the activity and took a pain pill, but overall has had a very good start to our new plan I think. I'm pleased and continue to tell him how great he's doing and how much I appreciate the effort.

The hospital is starting a new food service in January when they are planned to move into a new part of the hospital that has been constructed outside our window. This floor is one of two that are part of a new pilot program with the nutrition department that begins tomorrow.

At most hospitals we've been associated with a patient has a menu of food choices to circle what you want. At this hospital, you are given an assigned tray of food each day for each meal with no choice and the food has been worse than we can imagine. In just the past week or two the food has been noticeably better.

Tonight, as we were already informed of, a lady with a computer came around. She is our 'ambassador'. She handed me a menu of what we would be getting over the next week. An 'ambassador' will go over the menu and while they are in the pilot phase of the program they cannot make a lot of changes, they can at least make a few. So this lady confirmed Pete's breakfast for in the morning and we made a few small changes and now he knows what will be coming for breakfast.

They already had told us that these 'ambassadors' would be coming around in the morning with coffee service and a newspaper. So I wasn't surprised when this lady said she would be here early in the morning with coffee...what I was surprised at was that she said she would see us at 6:15 AM! I tried not to laugh. There is not way we are going to be getting up to greet her at that hour of the morning and as much as Pete loves coffee, he's not going to want any at that hour either.

That's even before the shift change for nurses and before the early morning vitals. I was nice to her and will be nice in the morning in the dark. We get an IV of antibiotic at 5 AM so we will not be wanting to get up again at 6;15. Still, it's a nice thought and a nice gesture.

Monday, 12/8/08--Communications Improvements

Friday and Saturday nights we got virtually no sleep due to so many interruptions every hour for drugs, vitals, labs, bathroom breaks, and one thing after another. I needed to go do laundry, but was exhausted. We tried to nap during the day, but continued to have interruptions each day as well. Pete was able to get sleep during the day because each day he is drugged with Benedryl and often other drugs that make him sleepy.

I finally had to leave Sunday afternoon to do some laundry just to have something to wear. I got out to the car to find an almost completely flat tire. I knew I was low on gas and sure enough the gas light was on, but so was the check engine light! This was just overwhelming. Why me and why now?

I did get some air in the tire. It seems to be holding and only a slow leak, but I will need to go get it checked out and fixed soon. But now I'm going to have to have the check engine light checked out. I shouldn't complain really since we've got about 55,000 miles on this car and it asks nothing from us. We change the oil and rotate the tires religiously and changed to synthetic oil at 40,000 miles. We use K & N filters. I'm sure that the check engine light is nothing serious. We get all the maintenance done so there should be no surprises.

We showered last night. We are having a problem in the room because the bathroom is so large and tiled and has no heat vents in it that it is freezing cold now that winter is here. Pete is naturally always too warm, but we already know from experience that right now and for the next few months he will be chilled and huddled under blankets. With the bathroom cold he gets cold even using the toilet and taking a shower really chills him to the bone.

We wanted to be ready for a big, busy day today. We already knew we were scheduled for a bone marrow biopsy. The bone marrow people showed up before 8:00. Somehow they never seem to coordinate their time with the nurses on the floor. But we knew this already so were as ready as we could possibly be. Pete just needed time for the bathroom quickly and I just needed to dress. The timing meant that he had to skip breakfast too.

The main reason that we want at least a little advance notice for this procedure is that it is very painful and the thought of it even is stressful. The nurse needs time to give him Ativan to get him to relax before the procedure.

This is the third bone marrow biopsy that Pete has had here. They are the most exact means of staging his Myeloma. More so than just a blood test. They also always do a gene array to see how many chromosomes are 'messed up' from the Myeloma.

He has to lay on his stomach for about an hour to do this and they numb his backside above the cheeks and drill into his bone. They need a sample of bone marrow and a sample of the liquid aspirate from there as well. Both the bone marrow biopsy people and the gene array people need this and each drill him for samples.

Pete was out for most of the day from the drugs. He slept comfortably. I was waiting for his doctor to come in and find out about this talk of releasing him, of replacing his port, and to once again discuss his medications.

Finally in the afternoon the doctor, charge nurse, and head nurse all came into the room. Peter was vaguely awake and aware of them and floated in and out of listening to the conversation. It was perhaps the best conversation that we've had with medical staff and it was such a relief to have a conversation where someone didn't have to keep leaving because of a pager or cell phone going off and taking them in other directions.

Peter had been left to have a conversation with his doctor last Monday because he wants to get rid of some of the medications he's taking. One, he doesn't like taking pills and they are hard to get down and two he feels better the more he gets off medications. He told me last Monday night that he had this conversation and felt good about it. Still, he didn't see any real difference and in the last two days has begun refusing certain drugs.

Any other hospital that we've been to always provides us with sheets on any drug they are giving us so that we know what side effects to watch for while he's receiving the drug and to be able to read about it. This hospital not only doesn't provide you any documentation, but no one tells you anything like this when they are giving you a drug for the first time. If you ask, like I did with his chemo medicines, the pharmacist will come talk to you.

I asked nurses on several occasions for lists of his medications back when he started getting a lot of antibiotics for infections and when they started changing. I never did get one until last night when some confusion prompted the nurse to provide me a list. I then was able to look up all the drugs on the Internet, taking the information loosely.

So today we talked about the drugs. One of the drugs he was taking and refusing was the largest pill size he had. It was Renvela. It is used to bind the phosphorus when you eat. He actually had not been taking it for two weeks now and his phosphorus levels hadn't changed at all. So we requested that it be dropped and the doctor agreed to try deleting it for now and see what happens.

One drug, Vancomycin, was an antibiotic given in case of a bacteria associated with diarrhea. Since he doesn't have this, it was dropped. It consisted of 2 pills 4 times a day. Most of the other antibiotics he gets via IV right now as a precaution.

Zofran was given during his week of nausea and whether it, the Marinol, time, or something else ended the nausea the point is that he doesn't have nausea so doesn't need it anymore. It also causes some sleepiness.

Because his white counts are not coming up much even with the growth factor shots, it is possible that some of these drugs are suppressing this. I don't think we're going to see any results overnight, but perhaps this time next week we will.

We discussed the fact that if he takes Ativan at night to be able to be knocked out through all the interruptions at night that due to his reduced kidney function the drug keeps him drugged and dopey until well into noon or so the next day. On top of that, since his platelets remain low he has to have Benedryl every morning first thing (while the Ativan is usually still in his system) as a pre-medication to receiving platelets and that makes him sleepy for most of the rest of the day.

There are several problems in this. First, he feels groggy and drugged all the time and doesn't like feeling that way. At best he only has a few hours available to spend time sitting in the chair next to me and even then dozes from a drugged feeling. Second, hospital staff of varying types are always asking if he's going to get up and telling him he needs to exercise and he can't lay in bed all day as if he were lazy or it were his fault. And with all the interruptions at night he has to sleep sometime anyhow. So it's really a no-win situation. I had mentioned this once before, but this time I wanted to get the point across better and I did.

I think it helped to have more people in the room listening because sometimes one person would understand it a different way and explain a solution to another one. This helped make it a really good communication experience.

The general idea is to move towards an outpatient basis. I am not comfortable for him to be an outpatient until his white count comes up more, until he is weaned off drugs a little more, and until we can get him out of this drugged state and get him some needed Physical Therapy. As much as we'd like to be out of the hospital, that's certainly not the same as coming home and we don't want to have any mishaps because of being released too early. The result is that we would end up sitting in the emergency room waiting to possibly be admitted up here again or we would sit in the outpatient clinic every day to receive some of the IV's such as platelets that he's receiving now as an inpatient. Neither one sound like it would be very pleasant for Peter.

There was some discussion about just the possibility of collecting stem cells again to replace the contaminated ones. Nothing in stone, just loose discussion.

There was discussion of a different kind of port being placed for up to 3 months that would allow for any possible dialysis, collection, medication or whatever.

For now, the charge nurse and doctor went over his entire medication list and made fairly major revisions. We are going to try different drugs rather than Benedryl to help with premedicating blood products like platelets that won't make him sleepy. The pills he has to take have his consent and have been reduced as well as spread throughout the day.

He has agreed to take pills within 1 hour of them arriving and to try to do some exercise with PT each day no matter how little.

The kidney doctor came in later in the day after making several attempts during the bone marrow biopsy and other events that prevented him from entering. Peter had told him about me and where I was last week and he wanted to meet me. He said it had been well over a week now since the last dialysis and his kidney numbers were still well within tolerances.

I mentioned the port that the other doctor had recommended for possible future dialysis. He said that while it's still too soon to tell, that if in another week there was still no dialysis needed that he would see little need for worrying about future dialysis ports.

He said that because he is doing so well, they would not be visiting in person each day if that was O.K. with us, but they would be looking at the numbers each day on the computer and if there was anything that indicated a need for dialysis they would certainly let us know.

He summed up with hoping that we would not need the services of his team again and hoped that we would continue to do well. I thought that was a pretty great thing to say and it really helped with Pete's morale. You don't often hear doctors that wish themselves out of a job.

So, it was a busy day to say the least, but we feel like we are starting a new chapter and turning over a new leaf as of tomorrow.

We don't know how long we would need to be outpatient here in Little Rock before being able to return home to Roanoke. We don't know when we'll get to that stage, but we think we can see the light at the end of the tunnel. We don't know what medications he'll need to be taking as an outpatient or how we'll pay for medications, lodging, and food. We don't know how often we'll have to visit the outpatient clinic or what type of maintenance therapy he'll be on. We don't know if we'll collect more stem cells or have another transplant.

But we do know that in time we'll have answers to those questions and are comfortable now with the progress made today. Peter feels much more relaxed after this discussion and so do I.

Saturday, 12/6/08

I made it back to Little Rock last night. Pete was sitting up on the side of the bed when I came through the door at 11:00 PM. We sat and talked for about half an hour or so. We missed each other and it was good to just sit quietly and talk. We were interrupted between the nurse and the PCT taking vitals and such.

The room was very hot and dry which made me too miserable to sleep. I tried cooling down with a shower, turning the floor fan on a higher setting, and lowering the thermostat. The thermostat doesn't control the temperature of the room as one might expect.

Since cold weather has come to Little Rock, the people here seem fearful of it. I cannot believe the coats, boots, gloves, scarves and general bundling of people when it's simply 'chilly' to us outside. Because of this, places seem to really like to crank the heat up as if we're all going to freeze to death. Every evening it gets super warm in the room and it's so dry that it makes it hard to catch your breath. Once morning comes, it comes back under the room thermostat control.

The longer I've been back the more disgusted I seem to have become. I found out the following that just aggravated me.

• Pete has been stuck on the liquid diet for 2 weeks and no one has changed it yet nurses have noted that all he's eating is cereal, milk, and ice cream. Duh! He complained to me that they serve broth and a Popsicle for breakfast. Yuck!
• They changed his diet today, but changed it to lactose intolerant. He's not lactose intolerant. He's been living on cereal, milk, and ice cream for the past week while I've been gone along with juice.
  
• He has not been unhooked from his IV pump in 2 days. He does get a lot of drugs via IV for 1-2 hours at a time and platelets, but once they are done he is normally flushed and unhooked. He doesn't need any extra fluids and being hooked to the IV makes it much more difficult to rush to the bathroom when nature calls. He has to unplug the pump, wrap the cord and get any lines and roll everything to the bathroom. No, you can forget about calling for help with this. It would be far too late by the time someone actually came to help.
  
• The dressing over the area where his old port was removed has not been changed in the entire time I've been gone. Because it's under his shirt, it wasn't visible and no one read in the chart that there were two dressings to be changed. The other dressing was changed on 12/2.
  
• The room was filthy and he said hadn't really been cleaned much at all and everyone keeps bringing more and more 'stuff' in the room and leaving it and dropping things on the floor.
  
• The hospital ran out of platelets for a day or two and he wasn't able to get what he needed.
  
• Probably the most aggravating thing other than too many new nurses is that I was informed by both the night nurse and the day nurse that there is a doctor's order to have his port replaced. Pete says no one has talked to him at all about this and it's certainly news to me. Nothing is going to be done until we have some discussions on this!

I have not seen any labs today. We have a new nurse that is new to this floor and very nice, but confesses no experience in Myeloma. Thankfully I'm here to oversee things now.

I realize too how many little things that people just don't take the time to notice about patients. For example, if he was not eating why didn't someone ask why or what he'd like to have?

He's having more frequent trips to the bathroom and urgency is an issue. The doctor on call today for the weekend said this is common among chemo patients because of all the drugs and the gut doesn't know how to react. We've been through this before. At least this time it's solid.

There have been some small things that I do to make this process easier that are just not noticed by other people. When he's been trying to fend for himself in the bathroom department someone would always be coming in to take vitals. They wouldn't excuse themselves and give him some dignity and leave, but just get in the middle of what he was trying to take care of privately. I'm glad I'm here now to fill in the gaps. I'm leaving out a lot of detail here on purpose to preserve dignity.

I'll fill in more later when I know more, which may not be until Monday.

News from long distance

I've called Pete every day this week while I've been out of town and he seems to be doing well enough. He says he hasn't had any dialysis and had been forcing himself to eat a little each day.

Last night when I talked to him, he surprised me by stating that the doctor was scheduling a follow up bone marrow biopsy and other tests to see what the stage of his cancer is now. The doctor wanted to schedule it for late this week and he requested that we wait until Monday when I am there with him.

He said that if the results look good, he will be released from the hospital and go on outpatient status. He seemed pretty happy about that.

Since it was too late to call the social worker at the hospital, I waited until lunch time today and called to let her know that she may want to check with the doctor and if it was true that we would move to outpatient status then she would need to begin now finding us a place to live for as little money as possible.

I don't know how long we would need to stay in Little Rock, but I would assume still another month or so before they would allow him to return to his home hospital and doctor for follow up care.

Since Pete doesn't read his labs each day because they are very complex, I thought I'd better also contact his nurse to confirm these facts. I was disappointed to learn that he had a nurse that he'd never had before and she didn't know him from Adam or me from Eve. She was nice and I'm sure is a good nurse. I was just taken by surprise because one of the charge nurses that takes great care in handling details made a list of nurses we'd had in the past and promised me that it would make things easier on both the patient and the nurse if the nurse already knew him and what is normal or not normal for him.

The nurse told me that she didn't know anything about any doctors orders or his counts except that his white count was .03. I really started to stress out because it was much higher when I left. She told me to call back in a few hours and she'd try to look up his labs in the computer and tell me more, but since she hadn't had him before she really didn't know more to tell me.

I then emailed the head nurse and tried not to panic. As it turns out his white count is .35, not .03, big difference! Still, that seems low. She emailed me back and had talked to the doctor and he was looking at a release for next week. While this is good news, it is also worrisome because of our financial situation now that we've been away from home for almost 3 months already. It's also a little scary because they would consider releasing him if his white count is not normal.

Evidently, his white count is super slow to come back and they have given him the painful growth factor shots again to try to boost them more. This whole process is just slower. I sure hope it ends up being worth it when all is said and done. I am a little worried and worried that if there is reason for disappointment, how Pete will take it.

I'll be flying back in to Little Rock late Friday night. I'll know more when I see his labs and when we see the doctor on Monday.

Beth out of town week of 12/1/08

Postings will be pretty sparse this week as I'm out of town on business and will be posting to my own blog.

Pete had a really bad day and night Saturday with nausea. He flat out refused to take anymore pills. I convinced him to at least take the Marinol because they were tiny pills and they were important to see if they would help the nausea and knowing that they would eventually kick in and start to make him hungry.

Sunday morning he woke up and seemed to feel a slight difference. The Marinol had in fact kicked in two ways. One, he wanted some cereal for breakfast. He hasn't eaten since a week ago Saturday so this was a good thing.

Second, he had a hallucination. It was really funny and I know we'll laugh about it for years to come once we get past it. I'm laughing about it now, though he doesn't know yet what happened.

He was sitting on the side of the bed and about to stand up to get over to the chair. He was staring into space rather strangely. I couldn't see what he was looking at. I thought it was something on the rolling table. It took a few minutes for him to say anything and then he asked me if I 'saw it'. Saw what? We went through this 'game' for a few minutes. I couldn't get him to tell me what he saw where. Finally he said he was looking at a centipede. I still couldn't get out of him where and kept looking in his general direction and asking him. He didn't seem quite able to answer and was in this daze like he was mesmerized by this centipede!

I walked over to where he was staring and looked around and started questioning him. I asked him if it was on the table, the table leg, the floor, and I kept asking. Finally he said, "It's right there on the chair...don't you see it walking towards the pillow?" I didn't see a darn thing. Then he said that we are going to need to call an exterminator like we did when he had two mice in our room last month.

He thought it had crawled into the chair and seemed almost afraid to sit over there now. I moved the pillows and blankets from the chair and even picked up the chair cushion and didn't see anything at all. I am pretty sure this is one of the hallucinations that they said he could experience since the Marinol is marijuana. I couldn't help but laugh.

He did eat just a little bit and it stayed down fine. Later in the day he did have some bouts of dry heaves and I called the nurse for some Kytril. That helped.

I left about 5:15 PM for the airport. It had been an exhausting week with all this tummy trouble and I didn't realize just how exhausted it made me until I left the hospital. I am grateful for this distraction of this business trip.

I called Pete today about 2:00 his time. (I'm in PST zone.) He sounded tired, but O.K. He said he just had a few bites of some lunch. That's a good thing.

He also said that the new kidney doctors for the month were in and were going to do dialysis tomorrow, but with his numbers improving they didn't see much need for very much future dialysis.

He also had not been able to get pills down easily and had refused them for two days. He met with his doctor today and went over what he was taking and took some off the list that weren't needed as much and narrowed the list down to an acceptable bunch that he agreed to take each day. They also told him that his numbers are continuing to improve.

So, it's our anniversary and we're apart, but next year will be better and the important thing is that we are together for all the important things in life.

I'm hopeful that even though this week is going to fly by for me, that when I return to Little Rock that I'll see a marked improvement in Peter.