Thursday, 10/30/08 5 Million in the bank!

We have collected stem cells on Saturday, Tuesday, and Wednesday and are collecting today. Prior to today, they have collected over 5 million so far. They will keep going as long as they can.

Yesterday was an extremely stressful day. I got pushed to my breaking point and made a formal complaint to the director here as well as yelled at one of the renal residents. We have been asking for two weeks to be visited by the renal team or the attending physician since they have stopped seeing us at all. Someone from their team is on the floor each day, but they never come in to 'see the patient'. They have pre-arranged for Peter to receive dialysis on Monday, Wednesday, and Friday before they ever look at his labs in the morning. They never examine him or talk to us.

Peter is feeling much better and has asked to have dialysis cut back. He wants to get off it and from what I read in his labs and what our Myeloma doctor tells us everything except two areas is very well under control.

I completely lost it. But in expressing my self and having a little red-headed fury we actually had one of the residents come in and exam him this morning and go over the labs with me before we were even out of bed. Amazing! Medicine goes beyond the computer and reaches the patient!!!

I think my punishment is to withhold food as I have been receiving a guest tray here for the past month and last night there was no guest tray delivered and this morning for breakfast there was none. Little do they know with the way the food is here that's more of a blessing than a punishment.

Will report more later as we know more.

Tuesday, 10/28/08

It's been a whirlwind since the last post, which is why it's taken so long to make this post.

Friday morning was a lot of mis-communication between transportation, nurses, dialysis, and stem cell collection. As it turned out we finally got to the vascular department where Peter had a new vascular catheter put in after several hours of waiting and then more waiting afterwards. He missed his all important appointment for stem cell collection because even though he could have been at the location for collection at the 1:00 cut-off time, but we were sitting waiting and waiting for transportation to come pick us up.

Our nurse finally came down for us and took us to dialysis instead. He was there until early evening and then was wiped out as was I and I didn't even have any procedures done.

He ate pretty good on Friday for breakfast and dinner and was down to 214 lbs. and the fever gone.

Saturday they came early to get us for stem cell collection. The collection area is made up of small private rooms and a chair for someone else like me to stay with the patient. I stayed during the entire collection, though I was so tired that I dozed quite a bit and Pete slept the whole time.

They don't tell you how much you collect after the process like they did in Richmond because they have to separate out the various portions of the blood product. We learned on Monday that they collected 2.5 million from Pete. That was more than they expected due to his previous collection in 2006 for a previous transplant and the fact that he's been on antibiotics since 10/4.

We managed to walk some on Saturday to get to a scale and out to the wheelchair as well as having the wheelchair stop at the nurse's station instead of his room so he could walk the rest of the way back to his room.

Sunday Pete felt really pretty good. He was happy to be past the fever stage and ate a fair amount of breakfast as well as drinking some protein juice. I went out to do laundry and brought him back a hot dog and a Coke as well as a Ginger Ale. He really enjoyed it. We are very sick of the food here.

We took a walk around the floor and out to the elevator in the afternoon and went down to the first floor. Then we walked to the front door where I got a wheel chair to take him outside. We sat outside for an hour or so soaking up the sunshine and watching cars, traffic, and people.

We went out to the parking garage and I brought the clean laundry in on his lap to make it easier. We joked about just getting in the car and going for a ride.

Saturday night and Sunday night we had a nurse that was a little rough around the edges. He was obviously foreign and was terribly hard to understand. It wasn't just his accent, but his mixed up way of forming sentences made it extra hard. He also couldn't understand us. Pete joked when he brought a bag of IV antibiotics and Pete said something about him bringing 'the juice' and the poor guy thought that Pete wanted him to go get him some fruit juice.

The other problem was that unlike all the great night nurses that go our of their way to let us rest as much as possible, this guy insisted on turning the overhead light on for everything he did. I get mad enough about some of the assistant nurses that come on shift at 6:30 in the morning and want to do that and don't have much patience for it. After the second night of him doing it and even at 6:00 in the morning for the growth factor shot that I really snapped at him. We were very relieved to go back to a great nurse last night.

Monday we planned to walk down to the stem cell collection area because it is very near the elevators. At 5:45 Pete woke up to use the bathroom and started to get chilled. From there chills set in. This was how his infection road began back on 10/4. At 6:00 the nurse came to give him his shot and then after Pete was shivering and shaking so badly after three blankets that I called for help. He didn't have any temperature, but I warned them of how this started and the fever would come in 30 min. to an hour.

We were very lucky that the nurse we had was really a critical care nurse that normally worked at another hospital. He was the most efficient on the ball person I have ever seen in action.

Pete's blood pressure was 178/96 and his heart rate was in the 130's. The assistant that took his vitals said she would go tell the nurse right away. His temperature was normal.

After 15 minutes I didn't see a nurse so I went to find him myself. He had no idea because the assistant had never told him! He went right into action and by now his temperature was 103.

The nurse gave him his blood pressure medication because it was more important to get this under control regardless of stem cell collection or dialysis. He gave him Tylenol and put him on oxygen. By 9:45 his temperature had dropped to 99.

There was a lot of calling and informing and organizing going on all morning. They cancelled stem cell collection for the day. Pete was disappointed and feeling terrible to boot.

He spent all day fighting fevers. The nurse announced that he was going to go to dialysis later in the afternoon. I protested due to his fevers and didn't get anywhere. I had to leave at noon to go to the educational building on campus to prepare to give a webcast training session that I had contracted to do for an hour every afternoon this week.

Pete didn't come back upstairs until 6:30. I was getting very worried. They said he had a fever all the time he was down there and his blood pressure was very, very low. I was still upset that they would take him down there like that.

When I returned to the room after my class I knew Peter would be gone so that was no surprise. What did surprise me was that someone had started to make the bed, but had never finished. His urinal beside the bed from the morning still contained urine and hadn't been emptied or cleaned. Plus, Pete had an episode of belches that brought up liquid during the worst part of his morning and the tub where he had thrown up and the dirty towel was still sitting beside the bed. Not to mention both our lunches had been sitting there since noon even though it was now 4:00. I went into gear and cleaned it all up and put the trays out for someone to take away.

There was a lot going on during the day on Monday and Tuesday as the floor was getting a new call light system installed.

Everything associated with my class online also had Murphy's Law associated with it.

So Monday was a very bad day all the way around.

Monday night had fevers, but not so high. Tuesday morning there was a lot of discussion and assessment to decide what to do. It is believed that we are dealing with one bacteria that continues to hang around. The problem is that we were to have had a longer time with the catheter out and being on antibiotics. Due to last week's panic mode, that was not allowed to happen. And because of this, the stem cells that were collected on Saturday probably have that bacteria as well. They have taken cultures and nothing has grown yet, but it often doesn't show up for 5 days so it's too early to say for sure.

We saw the stem cell doctor twice and she agreed that it was worth the chance if his fever was low grade (99's). They gave Peter some platelets and blood to prepare him for collection. The next thing we knew the stem cell collection nurse and machine came to us. Pete had this procedure for four hours from 11:00 to 3:00. We won't know until tomorrow how many cells they collected. They said they anticipate it to be a lower collection amount due to the fever.

They tell us that they can tell by his labs and how much they collect just when he's given as much as he can or when it is too dangerous to continue the growth factor shots. We're hoping that he can hold out and collect enough. We get the impression that he'll be lucky if he can collect enough for one transplant and the idea of two transplants like we wanted may be completely out of the question. If we had been able to collect extra in 2006 in Richmond like we asked them or had collected right after we were in Salt Lake City perhaps things would have been different. It's not over until the fat lady sings though! So say a little stem cell prayer tonight, please.

This evening there seems to be more confusion. The stem cell nurse said that she would be back in the morning as long as he was ready. They are giving him platelets and blood tonight so he'll be ready hopefully. At the same time, the dialysis people told the nurse that they would come for him in the morning. I have put my foot down! There will be no dialysis at all until we can see one of these renal doctors. I have been asking our doctor to contact them for us as well as nurses and gotten nowhere. I have no names of doctors on that team or way to contact any of them. I have stopped two residents in the hall over the past week and asked for them to have their attending physician or the team contact me and that has gotten me nowhere.

We are not in favor of him going to dialysis just for the sake of a dialysis schedule. We were told originally that they would look at his labs each morning and determine if it was necessary. Now they are just scheduling it. They are also scheduling dialysis without even talking to another doctor or anyone else and must have no idea that stem cell collection is going on. If they knew that they would be checking on arranging appropriately as stem cell collection puts some fluid on and must always come earlier in the day than dialysis.

We'll see what tomorrow brings. Think stem cells!

Thursday, 10/23/08

Thursdays here in the hospital in Little Rock bring a biscuit and gravy for breakfast each and every week and the 'big' team that rounds which normally stresses everyone out.

We've learned that we don't always see the team. But we can sure hear them!

The large group walks from room to room and stands outside each door and each doctor in charge of the patient behind the door give a report. Then all too often the top dog, Dr. B, raises his voice and barks out questions, complaints, reprimands, and orders. He's trying to teach all the doctors and wants to get his point across. Often we hear him say that he is tired of them making the same mistakes. He's tough, but there's something about him that we like. We have to respect him because he is the brains behind this operation. I'm sure he doesn't want any failures, loss of life, or anyone not to do extraordinary with treatment. We wonder if that had anything to do with why the doctor and some staff left to start their own camp in Salt Lake City. We'll never know, but they do have completely different opinions.

This morning Pete woke up feeling pretty good like he did yesterday. We took a shower, dressed, and had breakfast. We planned a nice day together since there was nothing on the schedule at all for today so we had a free day.

When the nurse brought in our lab printout I had to look at it again to make sure it was really his. The numbers were unbelievable! I can't exactly believe this is all because of removing that bad catheter, but something amazing happened overnight. Maybe some of your prayers all of a sudden kicked in?

White count
Monday-2.41
Tuesday-2.54
Wednesday-3.66
Thursday........7.19

Since 9/27 his platelets have been in the 20's and a few times down in the upper teens. He's been receiving platelet transfusions every single day with no real change. He has not tested positive for anti-bodies that would cause this and they have tried matched platelets. Nothing has made a difference. Yesterday when they gave him two units back to back in his hand rather than his catheter they jumped up to 85 for the first time since we've been here.

This morning his platelets were at 54. Even though that's half of normal, anything above 50 is good for a patient like his. So something is turning out right.

The BUN is not the density of his buns, but the amount of urea in the blood. After dialysis the next day it has been in the 40's-50's and before dialysis it has gone up to 60-70 and as high as 96. Today it hit an all time low at 28!

So our day started off very well. I was much more excited than Pete. We sat at our make shift breakfast table that we share for every meal and listened in the hall. We hear the team come outside our door. It seems wrong in some way for them to stand outside the door and talk about you.

We heard Dr. B yell that no bone marrow biopsy had been collected since after Peter received the chemo several weeks ago. I know they had talked about doing it and then our doctor said we weren't doing it and the next thing we knew we were in the fever and infection stage for three weeks.

Then we heard the Dr. yell that there was no way that he was going to collect and it sounded like he was mad that Peter had been receiving growth shots for so long maybe, but he kept arguing that there was no way this man was going to be able to collect. He referenced how much of the marrow was consumed by the Myeloma when we came here. Well we have his former associate in Salt Lake City to thank for that! When we first met Dr. B he wanted to know why on earth we haven't had any treatment since June and we tried to explain that the doctor there told us to stay off for better collection results and our local doctor went along with it while he got worse and worse. I blame that fancy hospital up against the mountain entirely. They told us they could treat him and then yanked the rug out from under him and wanted cash in hand up front before they'd even consider it. Money grubbers!

Anyhow, we were feeling really nervous after all of this. We wanted to know what was going on. It scared us. We had already been planning on a walk so I pushed more for us to go out and walk off our anxiety.

We walked down the hall the opposite direction from the mob collected in front of other doors to patients. When we passed the nurses desk they were all elated to see Pete up and looking so good and walking so easily. Many of the nurses there have been assigned to Pete in the past and were astounded at the difference. We also saw the PT person and he was happy to see him up and doing so well. He mentioned to us that we would have another PT person do an evaluation with him later today.

We stopped and weighed. Pete is down to 216lbs. now. He was at 220 yesterday. For every liter they take off in dialysis you multiply that times 2.2 for the number of pounds it equals. I knew they had taken 4 lbs. off so was expecting this. I've never ever known him at this weight. At the rate things are going and what we have ahead of us I'm sure he's going to see 200.

Shortly after our walk our doctor came to talk to us. I told him what we overheard and he tried to calm us. He said we are moving on to collection today. Today? Talk about fast forward. He also said they will be scheduling a bone marrow biopsy.

Well, the rest of the day was a mess of plans changing constantly. It was really stressing Pete out. So much for our relaxing day!

We went from having he line placed today and collection to bone marrow first and then line placement to our plan for this hour is that the bone marrow biopsy is put off until after collection, all antibiotics are stopped, cultures were taken from Pete's blood and we'll see if anything comes back tomorrow, in the morning they will put the line in and then take him straight to collection. I'm sure this all will change by the time anything actually happens tomorrow.

In addition, dialysis will probably be calling for him to come down first thing in the morning and I'm to tell them that they can't have him tomorrow. I honestly don't think he needs any dialysis with his BUN number so low and all his other numbers normal to low except his creatinine which is still lower than it's been a lot of the time here and in the past.

It was also suggested that I go along when they take him down to the vascular department to ask if they can place the port lower like his other one instead of way up high in his short neck.

We'll have to check the blood culture results in the morning before we can have the line placed or the collection. We don't want to place a line if there is any problem, but more importantly we can't do collection and collect a bunch of bugs with the stem cells.

So tomorrow is going to be a heck of a day. Unfortunately, I am scheduled to teach a web class all next week for an hour a day in the afternoon. I had planned to go find the room the education department reserved for me and test everything. I'm not even sure how I can do that with tomorrow's packed schedule. I hate waiting until the last minute on things. I also had planned on going to the post office and to do laundry tomorrow, but I'm going to need to put that off for a while.

Also, if Pete does collection into next week and then does chemo, I will probably not be here for him for after chemo and probably not for the stem cells going back in. That's a very special day and it tears me up to miss it. I have committed myself to do some training in OK the first week of November and then the following week in MA. After that I only have two weeks and then I'll be in Las Vegas for a week on business and teaching. I have to keep making hay while the sun shines as my grandfather used to say. It still bothers me to not be here for him. That's my number one job.

In the middle of all the changes in plans today the PT person came to do an evaluation and set forth a plan for therapy and exercise for the next month. It was really a good day to come because Pete was feeling so well. He was able to get up from the chair and the bed easily alone and he walked around outside the room with her so he's done a lot of walking today. She was impressed and discovered that she lived in our area of VA for some time and is originally from Lancaster, PA so liked the idea that Pete has lived in Philly for 50+ years. We told her that his best friend from college lives in the Lancaster area too.

We talked about his rotator cuff issue and she's going to work some therapy into the plan for that as well. I tried to let her know that it really is best to have someone work with him to do PT and not just give him exercises to do on his own.

During the part of the day's planning where we thought he was getting a bone marrow biopsy this afternoon the nurse and I talked Pete into taking some Adavant to relax him. In hindsight that wasn't a great idea though we did have his best interest in mind. He slept through meals and everything all afternoon and evening and into the night. He's really been out of it.

So, that's as much as I know for the moment. We'll see what really happens tomorrow.

Wednesday, 10/22/08

Monday night and Tuesday were such a disaster that I didn't make a post. Aaaargh!

Monday night we didn't get much sleep. Pete slept some, but he didn't feel rested. I was too angry to sleep after I tried and tried.

Our room is right near a common gathering area among staff other than nurses. Some nights people sit out there and keep us awake with their talking and laughter. The worst of these times is between 6:30-7:00 both AM and PM which is when there is a shift change. It is unbelievable in the rise in the decibel level. Everyone is shouting because there are so many people that are so loud. Those ending their shift are talking to their friends and those coming on to their shift are catching up with their friends on what they did before coming to work. The other time is between 10:00 and 11:00 as some employees end their shift at 11:00 and there is a huge amount of noise, chatter, laughing, and having fun for the last hour when we are trying to go to sleep.

The biggest area I can see for improvement in this facility is in the nursing assistants, or PCT's as they call them here. I won't even go into my rant on the need for improvement and consistency in this area.

Anyhow, we've learned a lot from observation here. The PCT's are some of the most unhappy here and there is a lot of friction between the day shift and night shift. They don't play well towards each other.

One thing we've learned is that there is a big difference in the rolling blood pressure machines that they use every four hours to take vitals. Some of these machines are very coveted and these employees will go to great lengths to try to get one that they want. There are also differences in the blood pressure cuffs. The ones they like better have a single hook up for the cuff and the ones they don't like have two hoses to hook up to the cuff. All cuffs come with two hoses so there is this fight where one PCT will tie a knot in a cuff to use with the one machine and then another tech will cuss out whoever did that to us and untie the knot and this goes on day after day.

Somewhere along the way we acquired two cuffs so that there is one for each type of machine. I don't know if other patients have two or we just lucked out in this way. Because of this, the PCT's will reach for the closest cuff and not know there is another cuff. If I am available, as I most always am, I try to save them the trouble and let them know this fact. I am usually met with appreciation. Monday night I was not and this morning we had someone else with a very bad attitude that was highly argumentative when I pointed this out at 6:30 this morning.

There is such a lack of consistency in procedures with the PCT's that everyone does everything his or her own way. Monday night a blood pressure machine was left in our room so that it could be used and keep germs down. At 11:00 a new PCT came on duty and immediately and rudely came and took that machine because it was one of the coveted ones. I explained what I was told and she hastily pushed her other machine in the room and stated that she was leaving us one. She missed the point that she just brought one in with germs because she wanted the model style that we had that had been sanitized. I couldn't go back to sleep after that.

When she came back for the 3:00 vitals she was not only rude, but totally incompetent. She put the blood pressure cuff on Peter and then raised his arm and held it in the air while he was laying on his side to take his temperature under his arm (we've been using this practice lately). By her poor performance, she got a very incorrect blood pressure reading. She should've completed the blood pressure, removed the cuff, and then taken the temperature. The night nurse saw the vital signs later in the chart and came in and asked about it at which time I explained the situation. He sighed slightly and reached for a blood pressure cuff and took the pressure manually and it was of course fine.

Therefore, Tuesday started out with both of us being tired. I finally got up because it appeared that I wasn't going to get any rest. Pete just wanted to be left alone and sleep. He was starting to get a little grouchy (very unusual for him except in instances like this) because he kept getting bugged for this and that. That's just the way the day began to play out.

Our doctor had decided and consulted with the rest of the Myeloma team that the vascular catheter must be removed that day. Our nurse was busy giving Pete platelets in an effort to get his platelets high enough to prevent serious bleeding when it was removed. His platelets only got up to 39 and that scared everyone that were to be involved in the removal of this.

Part of the concern was that he would bleed too easily at this platelet level and the fact that this catheter was in an artery in his neck and if there was any problem it could affect his brain or do other serious damage.

Normal platelet range is 150-300 and to do any sort of surgery or procedure they generally want platelets at a minimum of 50.

Because of the low platelet count even after two transfusions of platelets, the doctor did not want to do this at bedside himself. He called the vascular department where they regularly put these in and take them out. We understood they were going to do something right away that morning when the platelets were done and Pete wanted a pain killer in advance. They told him it wouldn't hurt, but he still wanted to be knocked out partly for any discomfort and partly because he was sick of all the interruptions in his sleep.

Between the Benedryl and the oxycodone he slept almost the entire day between all the times the nurse would come in and report that she'd called again asking when they would be coming to get him.

When it got to late afternoon the nurse began getting concerned that they would stop taking patients at 5-6:00. She called and asked and they said they would be sure that he got in that day and had been on 'the list' since that morning. She also asked the charge nurse who told her that they would go home at 6:00-6:30. Time clicked by all day and the nurse called every couple of hours and the doctor checked several times and called himself.

After shift change the night nurse called three times and finally went down there himself and found that there was no one there. The doctor was pretty mad.

The plan for this was that because this device is where the known bacteria have been living to pull it out and leave it out for two days. The doctor had made a pact with the renal team to allow him two days with no dialysis and receive the antibiotics that he has been receiving but now without the catheter. Then to have another catheter put in late Thursday or early Friday so he could receive dialysis Friday afternoon or Saturday morning if needed. Then he would also be better set for stem cell collection.

So now the whole plan was messed up because this vascular department couldn't manage a 10 minute procure the entire day.

What ended up happening today is that we began by asking if it was really necessary to be removed since Pete hasn't had a fever the past few nights. The doctor insisted that it did because they couldn't take any chances in having infection or bacteria in the stem cells that they collect. To keep everything online with the kidney doctors he arranged to have them do dialysis first thing this morning, then receive platelets, and then a backup of a frozen blood product that helps in clotting. He also called someone higher up in the vascular department to ensure that this would actually get done. Yesterday everyone talked to the scheduling person.

We tried to talk to the doctors about weaning him off dialysis since his electrolytes that were high when we arrived here 31 days ago have been stable for a week or more now and only the creatinine and BUN raise each day. According to my records his creatinine was a lot higher for two months when he was in Richmond in 2006 for his transplant there and they never did dialysis.

Unfortunately, we don't ever see the renal team upstairs in his room anymore. Since his white count has come up out of the danger zone he has been going to dialysis and they make their rounds there. We don't really get to talk to them.

Today Pete was feeling pretty good. Certainly better than he's felt during a lot of his stay here. He ate his breakfast and was alert, talkative, and almost energetic. When they came to take him to dialysis they came to take him in his bed that happens every single time and we had to tell them that he only wants to go in a wheelchair. (He spends enough of time in bed and enjoys the ride down as well as the comfortable recliners they have for treatment in dialysis.) While we were waiting for the wheelchair, Pete walked around outside his room and was so much stronger than he's been in a while. He was feeling pretty good and in a good mood. He was ready to move ahead with collection and transplant and put all this illness behind him. His weight is down to 220 now.

When he came back from dialysis, he was naturally tired as that wears the body out terribly. He was also visibly depressed. He said that since he was in such a good mood and so awake he wasn't really sleeping like he normally does there out of boredom. The renal team came around and gave him two blows that I believe were uncalled for and certainly could've been handled better.

First they told him that he's always sleeping every time they see him. I can't remember them ever seeing him that he wasn't getting dialysis. They would make rounds up here when he was getting dialysis or when he was really sick with the fevers or see him downstairs in dialysis where he must remain still and in one place for four hours so what else is there to do except to sleep. He said that it sounded like a scolding or something was wrong with him.

Then they must have gotten word that we wanted them to consider weaning him off dialysis. The attending physician said with his accent that you will be on dialysis for a long time and you are not doing well. That really depressed him because he thought he was doing so much better and HE IS!

I tried to talk to out doctor about this and wanted him to help give Peter some positive news and to talk to the renal team about this, but it didn't go as well as I would've liked.

He tried to eat some lunch and was actually hungry, but we had so many interruptions that he finally gave up and wasn't hungry anymore.

He received his two units of platelets and they called for the extra products he was going to receive as well as calling the vascular department to try to get them ready.

About an hour later the doctor came in and exclaimed that Peter's platelets had risen to 85! How? He's had platelets back to back for weeks now and can't get his numbers out of the 30's and then they sink back to the low to mid 20's. The only difference this time was that they were given through a line that the nurse placed in his hand yesterday.

The doctor was so excited that he said he was going to go ahead and pull the catheter out himself and was going to call the vascular people to cancel. Then he came back and said they were on their way already to take him down there so they would go ahead and just follow that plan.

The next thing we knew the nurse came in and announced they were going to do it in the room and the doctor left for about an hour and would then be up there. It was about 3:30-4:00 before we did this. It didn't take hardly any time and came out easily with hardly any bleeding that was expected. The only downside was that the device was to have been sent to the lab to be analyzed for the bacteria and the nurse hastily tossed it in the biohazard sharps box for disposal.

Pete rested a couple of hours and then watched the Phillies in the World Series game 1 before taking a pain pill and going to bed.

By delaying all this by a day it throws the schedule somewhat. He will not have two days free because of the weekend looming. They will schedule a new catheter to be put in on Friday and try to do dialysis immediately afterward.

Pete is pretty tired of all this activity and just wants a break. It just doesn't look like he will really get one anytime soon.

Monday, 10/20/08

Yesterday Pete was feeling a little better than he has in the past few weeks. We took a wheelchair and went outside and sat for about half an hour and then rolled around other parts of the hospital for something different to do.

We saw our Myeloma doc who told us he was going to consult with his team and the renal team and see if we couldn't pull this catheter out of Pete's neck since he's done well without dialysis all weekend. Since this is the known cause of his week's of infections and fevers and dialysis doesn't seem as needed as it was last week and the week before, pulling it out and keeping him on antibiotics for a couple of days would hopefully guarantee to get rid of these infections once and for all. Everyone needs to agree to this though. If they agree and they can take it out in the next day or so, then he would still need to have another one put in for stem cell collection and any occasional dialysis needs. The hope is that after collection and another round of the super chemo he will get past the dialysis stage.

This morning we got startled awake shortly after 7:00 AM to news that transportation was here to take him to dialysis. This is similar to what happened on Friday. Pete is not one to rush around when he's home and feeling fine let alone when he's in the hospital and tired. I asked the nurse to please give us until 8:00 so that he could have a chance to get showered and changed, use the bathroom, and eat some cereal. We were lucky that we had one of our better nurses and she handled it. As it turned out, the transport driver simply sat outside the door and waited. We were ready to go by 7:45.

I made some phone calls and handled some emails and then left the hospital to do some minor shopping, laundry, and make a trip to the post office. I also stopped for some real lunch before returning to the hospital.

Pete had been up and was starting to feel run down. Dialysis is always 4 hours and since he's been urinating 800-900cc per day and it's almost normal as is everything except BUN and creatinine, it seemed to drag him out more to receive dialysis since he wasn't retaining extra fluid. He weighed 222 this morning. I'll bet he'll be at 220-221 in the morning.

He got back to the room before I did and said he actually was hungry and ate all his lunch. That's something since he also ate breakfast too. Surely a good sign.

His white count is climbing again finally too. He received more platelets and his platelets reached 34, a new all time high for the month.

The doctor came to tell us that his team agrees with his idea of pulling the catheter. He needs to talk to the renal team tomorrow and then he'll come in and pull it out and send it to the lab to be tested. They don't want to access his normal port in case of any infection problems, so they'll put a line in his hand like people get in the hospital that don't have a port. This is how he'll get his antibiotics each day. They anticipate giving him two days like this and then putting a new port in for stem cell collection and any needed dialysis. They may give him some lasix if needed to pass even more fluid.

As Pete put it, "finally we're moving forward".

Saturday, 10/18/08 A Step Backwards

Friday night did not go smoothly. Friday was a busy day and Pete was pretty tired that night. He asked the night nurse for a pain pill and just wanted to be knocked out to sleep.

He had a fever again and needed Tylenol. We thought the fever days were behind us. It was only a low grade fever though. Anything under 101 is not cause for concern here.

The assistant came to take vitals around 11:00 on time. About 2:30 Pete woke up to go to the bathroom. Not long after that it was time for vitals again. In the middle of this all vitals were taken again and we were told that it was for platelets. Pete received platelets earlier in the day and the numbers seemed to be doing better at last look. As it turned out, the night nurse was planning on giving him platelets. So then we ended up with antibiotic IV, platelets, vitals before and after platelets for a lot of interruptions. Peter was getting a little agitated and just wanted to sleep.

The next thing we knew it was 5:00 and the overhead light was turned on! There were two nurses there with a stack of equipment to take blood cultures. I asked what they were doing and one nurse stated, "taking care of your husband". I was in no mood as we had both been interrupted too many times during the night and we were both very tired and now had bright lights in our eyes. They stated that they were going blood cultures and a dic blood test (to be able to tell when he would be ready for collection). I explained to them that both of these were already done earlier today and they totally ignored me and continued to work. I was too tired to complain any further, but Pete told them that he was tired of being stuck all the time. They didn't really respond to him either. They finally got done and left, but by then we both had headaches behind our eyes from the lights. And it wasn't long before the nurse was back for the 6:00 growth factor shot.

When the nurse change occurred, the assistant came in to take vitals promptly and we were not too friendly. She is the first assistant we've had so far that actually brought the scale with her at the same time so she wanted Pete to get out of bed to stand on the scale too at this early hour.

When the nurse for the day came in we explained our night to her and let her know we just wanted to sleep. While she wasn't terribly sympathetic and continued to do her job, she was instrumental in communicating with the doctor after reading up on things and was able to discover that there had been some miscommunication on who was doing what which resulted in too many people taking some of these tests and causing Pete the discomfort as a result. She was able to put the doctors orders very specifically in the computer and went a step further to add special nurse notes for anyone working with Pete to see these and refer to the orders.

When the doctor came to see us Pete also let him know and both the nurse and doctor explained all this to him.

We slept on and off very interrupted through some of the morning. I finally had to get up and get dressed and just sit in the recliner and try to get rid of my headache. Pete slept until 2:00 and then got up for 'nature's call' and then relocated to the chair for the remainder of the day.

He ate some cereal and milk and had some o.j. We watched some scary movies on the AMC channel. He didn't want any dinner, but I was able to get him to drink half a bottle of Ensure meal replacement drink later in the evening.

He had another low grade temperature this evening and received some Tylenol. We took a nice shower and I trimmed what little bit of his hair was left to as short a length as possible. Then he turned in early and I watched an interesting show on the History channel about the dust bowl.

Our night nurse is a contract nurse that was called in. She was sensitive to his desire for rest and brought him a sleeping pill and his IV of antibiotics early so as not to have to disturb him later. She had read all the notes and would not be doing anything more than the normal labs. The vital signs would be taken twice during the night, but we've had this assistant before and she is very good at what she does.

There wasn't anything terribly wrong with the blood counts today. The white count did not continue to go up and actually went down slightly. The platelets went south again as well. Other than that nothing that is very bad news. He did not have dialysis today and there is no dialysis on Sunday except in cases of extreme emergency. I don't see that happening. It would be nice if he could go two days without dialysis and manage to be O.K.

I think tonight will be a better night. I hope his fever stays low or stays clear for the rest of the night. If it gets to 101 or above then they will automatically will need to do blood cultures, but I'm not expecting that. Hoping for the best.

Nighty-night.

Friday, 10/17/08 A turn for the better

Finally after two weeks of fevers and infections on top of infections and poor numbers across the board, we've turned the corner for the better. Thank heavens!

Yesterday Pete slept a good part of the day. He is having bone pain and we were told that was from the growth factor shots. He asked for oxycodone twice yesterday. He did go for a short walk with the PT person.

This morning we were awakened just after 7:00 by the nurse that just came on duty. She was very excited because his labs looked fantastic. Last night he didn't have any fevers either. His white count has doubled and they will be looking at collection of stem cells very soon. His platelets held without receiving any transfusions and all his electrolytes seemed to be holding their own without dialysis.

She told us that transport was coming to take him to dialysis. We asked if we could have some time since we wanted a chance to shower and have breakfast. The best she could do was to stall them for 20 minutes.

Pete actually ate some Frosted Flakes, milk and an orange juice. That's more than he's eaten in one sitting in the past two weeks. We quickly washed and put on clean clothes since there wasn't enough time for a shower.

He got to go in a wheel chair to dialysis. We're hoping that this will not be needed as much anymore soon too.

Things are definitely looking up!

Tuesday-Wednesday-10/15/08

It's been a rough couple of days. Pete's fever has continued, though now seems to be only at night and not as high and not as severe. Today they have announced that they believe he has a fifth infection.

Pete had dialysis today followed immediately by an echocardiogram to check out his heart.

Yesterday he sat up in the chair and napped and watched a little t.v. I was able to give him a shower before bed Tuesday evening.

I've been able to get him to sip on a little soup yesterday and today.

Those are little steps, but steps nonetheless.

Monday, 10/13/08 - Infections!

I have finally gotten the correct information on Pete's condition and it doesn't look good.

It is confirmed that he has four separate infections.
achromobacter
VRE - Vanomycin-resistant enterocci
gram-negative bacilli
coagulose nagative staphyloccus

These are believed to be coming from the vascular catheter in his neck.

Under normal conditions, two things would happen. First, they would remove the catheter from his neck and replace it. They thought about doing that last week, but until the cultures came back to prove that and with his platelets too low they decided it was too dangerous. Because he needs this for dialysis, it would have to be replaced with another one. This is still not an option because of his extremely low platelets.

Second, the best antibiotic for the achromobacter is imipenem. On Thursday night the emergency that Pete suffered while I was gone was anaphalactic shock. This would be deadly if he were to have this again. Therefore, that antibiotic and any in the same family cannot be used.

Because these two things cannot be done, it makes it more difficult for them to treat this. These infections are resistant to antibiotics and are hard to get rid off.

The reason that he has not been able to keep his platelets up when they give him unit after unit is because the infections are eating up the platelets. They give him platelets every day to just temporarily raise his platelets even a slight amount to avoid deadly situations. They have tested him to see if he has antibodies that may be killing the platelets, but he does not. It's just the infection.

His platelet count would need to be at 50 to have surgery to remove the problem catheter. His platelets have been 13-14 and after transfusion may get to 18-20, so they are no where near the desired and safe level.

All they can do for him now is to continue giving him antibiotics, switch them if needed more, give him Tylenol for his nightly fevers, and continue to give him platelet transfusions and dialysis. We're just in a holding pattern now.

I have no guarantees that this will turn itself around. He is sleeping all the time except when he has chills and I pile on the covers for him and he has sweating episodes and I put cold rags on his head and uncover him. He's drinking lots of water, but has not eaten in two days now and I can't even convince him to have a nutrition drink. He is completely and utterly worn out like a wet rag.

Sunday 10/12/08

Last night was a very busy night. The big fight lately has been to get Pete's platelets up and keep them up so that they can go back to giving him Lovanox shots to prevent blood clots. He's never had a problem with platelets in this aspect.

He has had low platelet counts from the Velcade that he's received for treatment for sometime, but not this low and it always comes up when he has a break from Velcade. And of course his platelets were low during his first transplant in 2006, but they came up.

He's been getting several transfusions of platelets a day and just not getting his counts up to where they should be. Normal platelet count is 150-300. His has been in the teens. They want them to be at least 30 and stay there. He's been down to 14. When you get to 10 or near that, you have a risk of your brain bleeding and all sorts of things happening.

Since platelets are what makes your blood clot naturally, when your platelets are low you bruise easier and bleed easier. If he were to fall at all with his platelets where they are, he might suffer such internal or brain injuries that he wouldn't survive. That's what one nurse told me anyhow.

So, back to last night...last night we thought would be quiet, but instead Pete received two units of platelets. In general, vitals are taken every 4 hours around the clock. That's at about 7:00 and 11:00 both AM and PM or within 30 minutes of that depending on what room they start making rounds with the machine. Then they always want to know if you've had anything to drink or any urine to contribute.

This last part is because when they do dialysis they calculate how many cc's he takes in and how many he puts out and can figure out based on his weight of the day how many liters they need to remove.

When they give him platelets, they have to turn the light on to cross check the bag from the blood bank with the tag and his wrist band. Then they have to take vitals before and after to monitor for reactions such as increased temperature or blood pressure.

Last night, since they did vitals at 11:00 and then two units of platelets and lights on and extra vitals for that and all that times two made for a lot of extra interruptions. Also at night around 3:00-4:00 the vitals get taken but this is also when they draw blood for labs for his daily report of 'numbers'. So we have that during the night.

Plus, every day at 6:00 AM and PM he gets this really nasty and painful shot in his belly for the growth factor. This growth factor will help him over produce white cells and tell them when he's over producing stem cells for collection. So, not long after you get to sleep after the labs are drawn or more platelets being hung, you are again awaken for this shot. And keep in mind that if he has to get up during the night due to 'nature's call', then I always hop up to help him since I don't want him to fall.

Because of this non-stop action during the night we were both exhausted today. The nurse that came on for the day was just super. She and the assistant put a sign on the door not to disturb us. We didn't have anything that had to be done they said so we could just sleep as long as we like. We finally got to sleep at 8-8:30 or so I guess and slept until 11:30. That doesn't sound like much, but it felt great. Then we both took an afternoon nap as well from about 3:00 until about 6:00. Pete slept almost the whole day.

He's had dialysis two days in a row and had a rough week and been fighting this infection. As it turned out I found out more information this evening on a lot of this.

About 6:30 Pete got up to go to the bathroom and he felt very warm to me. I had them come take his temperature and sure enough he had another fever over 101. He's been on antibiotics for a full week now. He has had fever and chills and increased blood pressure and heart rate all evening and night. I've stayed up to either put covers on him or take them off or put a cold rag on his head or give him ice water to drink.

After the first Tylenol wore off in 4 hours his fever went up to 103. I changed his sheets and shorts because he was soaking them in sweat.

What I've learned is that what happened Thursday night was not the result of a clot, but anaphalactic shock from an antibiotic he had called imipenem. He does in fact have a blood clot in his leg though.

I also learned that the blood cultures that were taken last weekend came back today and he has VRE which is a resistant infection that I have to get straight first, but it is a type of strep from what I can understand.

I'll learn a lot more tomorrow when his doctor comes in as I want to know everything about everything.

It just feels like we are never going to get to the point of stem cell collection let alone the actual transplant. All these things just keep happening. It's frustrating and scary.

After all the chemo over the past 6 years and the super strong chemo he had with his transplant in 2006 and never losing any hair on his head, today that started. He pulled a few loose hairs and there were hairs on his pillow. I spent a fair amount of time twice coming his hair and pulling loose hair out with my hands. I think it's about half gone now.

I'm hoping that in the morning he'll feel up to having a good shower and I can wash his head to get rid of more loose hair and then just shave it very carefully. It will be a new old look for him since he has shaved his head in the past before I knew him as I do now.

Week of 10/6/08 Summary...long

Last weekend (10/4-5) Pete was fighting an infection. I was planning on leaving Monday afternoon to drive back to Roanoke and be able to spend the night if I didn't feel like making the 12-hour drive straight through. Even if I drove straight through, I was looking forward to being home for all day Tuesday to pick up some things we didn't get when we left for Little Rock on 9/21 and finish up a few things that I wanted to do.

With Pete being so sick and not improving as I had hoped, I decided to stay with him on Monday. Monday night I desperately needed a good sleep to get up early Tuesday and drive.

There are a couple of nights when there seems to be a certain crew working that is really more interested their social time than anything else. Our room is closest to the desk and work area where these gatherings take place. This is not the nurse's station. They are located at the ends of each hall and are generally quiet.

I have complained about this in the past and sometimes a nurse will make it stop, but it usually always starts up again. I have been told to go tell the people, but when I am tired I do not want to get up and leave the room to do this. Plus it is only 2-3 nights per week that this happens. And, I don't want to make any enemies when Pete's life is in the balance.

So, I got absolutely no sleep on Monday night. Pete only got sleep because he asked for something to put him to sleep. I finally dozed off about 6:00 only to be startled awake, as was Pete, at 6:45 in the dark when the new shift came on duty and a nursing assistant open the door and flicked on the overhead light! Boy was I ticked and I didn't hold back letting her know it.

All night long, nurses and assistants come and do vitals, change IV's, and all sorts of tasks without turning on any light. They use the light from the hall and bathroom door and barely crack each door enough for them to see.

I waited until the nurse came in with his labs before leaving and was going to say something about the incident, but she was the same way so I didn't waste my breath.

I had made a list that I was going to leave on the door, but was afraid it would be too 'Martin Luther' style so instead I tacked it on the bulletin board outside his room. I could hear the nurse or assistant or both saying "you've got to be kidding me!" when they saw it. I just wanted to be sure that if some nurses or assistants came on duty and didn't get information passed to them about Pete that he would not do as well. He wouldn't have anything too serious happen, but little things that I do like making sure that his water and urinal jug are within reach of the bed. Often I have to go looking for them.

I ended up leaving Little Rock about 9:00 Tuesday morning. I left the hospital and stopped at the post office to pick up the first of our forwarded mail from Roanoke.

I was so tired that I didn't have so much as a free chocolate milk at the hospital. I thought I might get a Hardee's biscuit on my way, but I learned there are no Hardee's in Arkansas that I could see. So, when I topped off my tank later in the day I bought a chocolate milk and a Code Red Mountain Dew and a candy bar to hold me over. I really didn't have much of an appetite.

I thought I would at least stop for a nice dinner. I wanted a good square meal instead of the trays of hospital food I had been eating.

It was raining when I left and rained Monday night as well. It rained on me all the way until the VA state line. I was so sick of driving in the pouring rain! I stopped in Cookeville, TN where there were plenty of places to eat. I didn't want some chain, but couldn't find any real local diner type places. I ended up stopping at a Ryan's because we used to have one when I lived in Concord, NC and I wanted just a simple steak and baked potato. Well, turns out they no longer have menus to order from anymore. They have become like Golden Corral and just have a buffet with some cheap sirloin on the buffet. So I passed. I next went to Shoney's. I thought I could have a hot turkey sandwich or hot roast beef sandwich or pot roast or something comforting on such a rainy night. No such luck. They had a buffet and sandwiches, but nothing else. So I left there too and got a Quiznos sub which I downed in the car and hit the road. I was very disgusted.

I arrived in Roanoke about 2:00 Wednesday morning. Our cats were very happy to see me. I checked email and sent a couple of messages that I had arrived safely and then tried to go to sleep. I was too tired, too achy, and cold. I had to get up and get the comforter to keep me warm all alone in the big bed. I was so happy to be home though.

Wednesday morning I was awakened very early by the phone. As much as I tried to sleep, I couldn't get back to sleep. I had maybe 3-4 hours of sleep so just got up and got busy with things that needed to be done. I needed to leave somewhere between noon and early afternoon to drive 5 hours to Virginia Beach for the CAD Camp I was teaching. I wanted to arrive at my hotel early enough to have time to relax, collect my thoughts, prepare myself mentally for the upcoming day, and to have that nice dinner that I deserved.

Well, between having too many things to do, having some work that needed to be done before I left, and having my watch set on CST, I didn't leave Roanoke until after 4:30. Best laid plans. By the time I filled up the car (gas was now down to $3.23), stopped once to stretch my legs, and being stuck in an hour traffic backup at the Chesapeake tunnel I didn't get into my hotel room until 11:00. No dinner. Internet access not working in the room. Just slept until my 6:30 wake up call and then go, go, go all day.

I talked to Pete Tuesday and Wednesday and he sounded good. He'd been able to shower, dress, have something to eat, and sit in the recliner and watch some t.v. It sounded like the worse was behind us now.

I left Virginia Beach at 5:00 and was sure I'd be in rush hour traffic. I again promised myself the good dinner this time! I stopped at a Wawa station where gas was even cheaper and got a grape soda and a pretzel. I arrived back in Roanoke about 11:00. No dinner.

I was really feeling stiff from so much time driving so I took a muscle relaxer and went to bed after doing some email.

I was again awaken early in the morning by a phone call...wrong number. I took the phone and cell phone and put in the bed with me so I wouldn't have to get up again at least. I had a hard time getting back to sleep very well, though I did nap briefly. I kept looking at the cell phone imaging that I could hear it vibrating.

As it turned out, one of the nurses that I really like and respect had in fact called the cell phone about 2:30 AM. She very calmly stated that Peter was going to be transferred to the ICU because of respiratory problems and asked me to call her. I had the phone on vibrate so I didn't hear it and was so sound asleep that I didn't hear it playing the music for a message. I felt terrible that I missed this important call and upset that I was so far away.

I immediately called the nurse and the switch had just happened so I got the day nurse, who is also someone that I really like and respect. She told me that they were able to control everything during the night and he was stable. What she explained was that the night nurse was in twice 30 minutes or so apart and Pete was sleeping comfortably. She was hanging his IV antibiotics and then finishing them. Not long after that he rang the nurse call for help. She said he was gasping for breath. Peter says it wasn't that dramatic but said that the room filled up with people to help.

They put him on 3 liters of oxygen, gave him some drugs, and had respiratory come in and give him some breathing treatments and he stabilized. She said that his heart rate was racing at over 140 and his pulse or oxygen level was very low.

From their best guess, Pete had a clot that passed into his lung and he passed it. I have yet to confirm or really understand this and probably won't until at least Monday when I get to meet his new doctor. The nurse told me that he was going to get dialysis as scheduled and would also be having doppler ultrasound done to see if there were any clots elsewhere. They did check this when he arrived.

Normally they give a shot of Lovanox to prevent clots from spending so much time in bed. Because his platelets are so incredibly low, they have not been able to give him this shot. In addition, they have been giving platelets after platelets each day and for some reason his counts are just not coming up. This has never happened. They have announced this evening that they need to find a more exact match, but Pete has no antibodies of his own right now to be able to match.

When I talked to the nurse Friday morning, she let me know that he was O.K. and they would keep a close eye on him. There was no panic in her voice, but being 788 miles away made me feel very anxious. I wanted to talk to Pete, but knew I probably couldn't. I told her that I would get ready to leave and hopefully be there late tonight.

I gathered my thoughts and then called back to the nurse's desk. I didn't want to bother the nurse again, but instead left a message that I'd be leaving by noon and be there in the wee hours of the morning and asked that she have Pete call me when he was awake and if felt he could. I really needed to hear his voice and hear how he was so I wouldn't rush so fast as to get in an accident or be too stressed on the long drive.

I raced around the house and seemed to screw up everything I touched. Rather than throw my dirty laundry in the car and have to pay to wash it at a laundry mat in Little Rock. I took time to do laundry, gather some winter clothes for our upcoming months here, repack some of the car, and get some more knit shirts and shorts for Pete to wear in the hospital. The car was loaded.

I left much later than I intended due to some problems I had in the house and never heard from Pete. I hit the road and drove as fast as I possibly could without getting a ticket. Gas was $3.13 in Roanoke and $2.99 several other places including Arkansas.

I stopped in Knoxville and called the nurse to check on Pete since I hadn't heard from him. She said he was fine and sitting in the chair and she had just been in there talking to him. I told her that I would call him. She said that she had been very busy and hadn't told him that I was coming or that I wanted him to call me.

When I called him he sounded fine and down played everything. He said he was fine and that I should stay home and get some rest and take my time to come back to Little Rock. I explained to him that I was already in Knoxville and about the call I had.

I'm sorry that I didn't call him earlier as I might have rushed a lot less and perhaps at least gotten some of the things done that I needed to get done at home. I had a lot of paperwork and some chores that I wanted to finish. I didn't want to wake him and I didn't want to cause him anxiety on oxygen or getting tests or dialysis.

I arrived in Little Rock about 2:30 AM on Saturday morning. The roads in Little Rock are terrible and I-40 is riddled with holes, rough expansion joints, and as rough a ride as you'll find anywhere. I spent about 30 minutes half an hour outside of town on I-40 looking for one of my brand new hubcaps that flew off when I hit a hole too hard. I didn't find it and am really ticked.

The parking attendant booth was closed, but I was able to get into the lot. I had to enter through the emergency room because that is the only entrance that is open during the night. That meant that a security officer had to take everything out of the bag I stuffed with Pete's clothes, my laptop bag, and my purse. I was very tired and anxious to get up and see Pete and this delay was annoying me.

It was about 3:30 AM before I got to see Pete. He'd had a sleeping pill and was very groggy. We talked for a few minutes and then tried to get some sleep.

We were awaken about 6:30 for some blood work and a few other things so went ahead and just got up for the day. I'd only had maybe two hours of sleep.

We talked for quite a while. Since it is Saturday, there is another Myeloma doctor on call and making rounds. He didn't have anything notable to say. I needed to run to the drug store to pick something up that I didn't get in Roanoke and since I was getting sleepy, I decided to just get it over with and come back and take a nap. We anticipated Saturday and Sunday being fairly quiet.

I ran into the worse *itch (insert your letter of choice here) at the parking attendant booth. Each week I pay $9 for a parking permit. I hang it from the inside rear view mirror when I park. The one I bought last just expired on Thursday. She would not accept it to cover the ticket I got in the garage at 3:00 AM. She insisted on $5. I did not have $5 on me and she didn't take check cards. She said cash or check. The checkbook was in the very back of the car in a back pack. Cars were lining up behind me. I told her I wanted to purchase a new parking permit and was going to the drug store and would bring back money from the ATM to buy one. She said that a new permit would not cover my time from 3:00 AM to the now 11:00 AM. Unbelievable!

There certainly wasn't anything that I could at this point because I couldn't back up and I couldn't go forward. Her solution was to give me a parking ticket! I was ready to tear out of the car and go after her.

After 2200 miles of driving (788 * 2 + 300 * 2), no real meal, and a grave lack of sleep this nasty person wants to add to my frustration and aggravation.

I went to get what I needed at the drug store, took out $20 from an ATM, and returned to cars lined up waiting to get into the parking lot and cars lined the length of the parking deck and around the end of the next row waiting to get out. I had to stand at the booth and wait for a car to let me walk up to give her the money. She gave me my weekly permit and I made sure I got a receipt.

When I returned to the hospital room I was quite livid. Then I walked in and instead of Pete snoozing in the chair where I left him for the brief time I was gone, he was in bed and hooked up to dialysis. He just had dialysis yesterday and his labs weren't bad at all so I was really confused. The nurse explained to me that no one knew, but the kidney doctor said he'd rather he receive one smaller weekend session rather than go all weekend without any treatment like last weekend and have things start to get out of control. It was also important to remove any excess fluid that might be causing problems for his lungs after his respiratory distress.

This has been a week I would not want to repeat on any level. As much as I'd like to spend some time at home, I have no interest in driving there again except with Peter. Peter has had more problems lately than in all the six years since he was diagnosed. We are certainly being tested it would seem or prepared for something.

Please Pray

I have not updated the blog all week because I have been traveling all week. I had hoped to have a day at home in Roanoke to be able to take care of some financial problems that are getting out of control to the serious point.

I received a call during the night on my cell phone that Peter went into respiratory distress. I talked to his nurse this morning and they originally had planned to put him in the ICU, but for the moment have taken several steps to get him under control and put him on oxygen.

He had made a distress call to the nurse and couldn't breathe. His heart rate was dangerously high and his pulse was very low. They believe that he got a blood clot in a lung. Currently they are doing a doppler ultrasound all over to see if they see any clots at all. They may do other tests through the day as well.

He has been stressed anyhow while I've been away because a bill collector has been calling his cell phone non-stop each day. Since he can't reach the hospital phone as easily, he was using the cell phone to call me each day or for me to call him.

I asked the nurse to please keep me updated on any changes and to please ask him to call me when he felt that he could do so. I don't want to call and bother or wake him, but do want to talk to him if at all possible just to know that he is O.K. and hear his voice.

I'm trying to throw what I can in the car and do my laundry and then drive straight to Little Rock.

Please pray that God will be with me to help me to get there quickly and safely and for Peter to hold on until I get there.

I will update the past week at some point over the weekend.

Thank you.

Monday, 10/6/08

This has been a very busy day. It began with the night nurse (a very on the ball gal), who came in at 6:15 AM to give Pete a unit of blood prior to dialysis and telling us that his kidney function was really in the toilet.

She also told us last night that the infection was listed as probably a staph infection related to the catheter in his neck.

We've had a rush all day and I have delayed my trip home until early tomorrow morning to see this all through today.

Pete had dialysis, more bathroom problems right before, blood cultures done from every conceivable port or catheter he has, urine sample, antibiotics, and not a whole lot of rest.

The kidney team came by during their rounds and said that they are relinquishing control to the oncologist team to get this infection under better control. This needs to be taken seriously and is right now. I know that.

The kidney team also said that since he didn't have dialysis all weekend and his numbers got so bad the infection could be part of the reason as well as his white count dropping so low as expected. They don't see any end to dialysis in the near future and it may be needed daily at some points.

The oncologist is ordering tests and keeping on top of things with the pharmacist.

Peter will be getting a CT Scan shortly to check for pneumonia and then a Dopler ultrasound to check the chest cavity as well.

They were going to totally replace the catheter he uses for dialysis, but then decided there is no proof that is the real problem.

They need to determine if the antibiotics he is receiving are doing any good and if they are not try to isolate more specifics with the infection he has to cater the antibiotics to it.

And he's still going to need a stool sample. Joy.

I'm hoping that we'll get some good news late tonight so that I can travel without feeling guilty or without too much worry that something will happen to him while I'm gone. I'm due to teach at a CAD Camp in Virginia Beach on Thursday, 10/9 and need to be there Wednesday night. I considered flying from here to there, but decided that I would really like the opportunity to go by home on the way there and back in Roanoke so decided to simply drive.

Update on Sunday, 10/5/08

Pete is finally resting comfortably. The night nurse and assistant were just in to assess him and do vitals and his fever is down. I can tell by the way he is breathing easier and by the feel of his skin that the fever is gone. I'm hoping that we both can sleep peacefully tonight.

He had a spell with a run to the bathroom earlier. The day nurse said that's exactly what was supposed to happen because that purged all the excess potassium from his body at once. He was very embarrassed and upset about it. Since then all has been quiet.

Tomorrow will be dialysis and we'll expect to see the doctors during rounds.

Sunday, 10/5/08

It's 2:00 in the afternoon and finally Pete is getting some much needed antibiotics. It's taken almost 24 hours to get him something to help. We have had the same day nurse two days in a row and she has been the only one that has not just been oozing with friendliness and compassion. She never smiles, never wastes words on anything that isn't exactly what she's bringing or wants us to do. She is just cold. I try to have compassion and think that perhaps she's going through a difficult time in her personal life and not take it personally. Still, I'll feel much more comfortable and at ease when we switch to a new nurse. I suspect that we'll have her for a third and final day tomorrow. I really hate to leave for Roanoke on Monday with her in charge and with Pete feeling so sick. I could leave early Tuesday if I absolutely had to do so.

Pete has an infection that is causing the fever. He's going to be getting antibiotics via IV 3 times a day. As I understand it, he's going to have two antibiotics, but I haven't seen the second one yet and don't know what it is.

The Myeloma doctor that made rounds this weekend was here about noon. He asked how things were and listened to Peter, but didn't say anything much other than the fact that he does have an infection and will be getting antibiotics.

The next thing we knew was that a nurse came to draw blood gasses and the regular nurse brought in two bottles of nasty-looking brown stuff that she instructed me to have him drink to reduce his potassium. Then she stated that it may cause diarrhea.

I was already very short on sleep as I had been up and down all night with Peter and since this nurse came on at 7:00 she had no visible compassion for what we'd been through and appeared to have an attitude that we should be up and about. She must have made a dozen different trips into the room and each time was loud or would turn the light on and leave it on or move the table with Peter's water and not put it back to where he could reach it or something. Each time I would have just dozed off and be startled awake or would have to get up and turn the lights off for Peter and I to try to sleep or to get him his water or whatever else.

I tried to remind myself that I was short on sleep and not my normal self. Still, there had been no discussion in advance of any of these things and they just kept popping up again and again. I finally refused the liquid because I knew how badly he felt and drinking something nasty was not going to go over well as well as diarrhea being his worse fear. All she did was go to the doctor and come back and say that "the doctor said he had to take it". I asked if this doctor or anyone else had consulted the kidney team at all since we had not seen any of them. She left and came back again with her 'message' that the doctor just called the kidney team and they said he was to drink this.

I found this very strange and was feeling dis-trustful. The dialysis takes away potassium and Peter had just down two orange juices which were full of potassium. We understood that if he needed dialysis today that he would have it rather than waiting until Monday. Also, Peter has had a pill in the past to lower his potassium. I was not trusting this liquid. Something just doesn't feel right.

Peter does not like to argue, or be bothered when he is sick. When the nurse left, he said he would just take it to get rid of her. He did the same thing earlier when we were harassed over and over by different people for a urine sample.

Right now he's burning up to the touch. He had some Tylenol first thing this morning, but no one has taken his temperature or given him anymore. I guess I'd better go find someone to take care of both of those things now.

Saturday, 10/4/08

What a day!

Since it was Saturday there were no real rounds with the teams, no dialysis, nothing scheduled for the day. That meant that we could just take it easy and relax.

We went to bed at 9:00 last night and things were fairly quiet. We made no moves to get up this morning. Plus it began raining, which is the first we've seen since we've been here. So that made for a dreary day with the blind open. So we stayed in bed until 8:30. Then we finally arose and very slowly had some breakfast and just sat around. We ended up drifting off to sleep until 11:00. Then we had a shower and got dressed. Just a generally lazy day.

Pete's labs showed that his white count was almost completely at the bottom and his creatinine level had not risen today as it had after each other dialysis session. His CRP and LDH levels rose slightly after they had been decreasing every day since his chemo a week ago.

Around lunch time a new doctor came in who was one of the Myeloma doctors that was on duty for the weekend and who we hadn't met. He was jovial and didn't stay long or say too much.

Pete was watching football and old movies and I was a little bored so thought I would go to the car to bring in some more clothes. I changed my mind and decided to just go do laundry about 2:00.

When I returned about 4:30, Pete was hooked to an IV and stated that he was getting magnesium. He also stated that the nurse told him that he may get warm from it and he stated that he did feel warm. I turned the fan on for him to help cool him.

Within 5 minutes he asked for a sheet to put over his legs. I gave him an extra blanket and could see that he had goosebumps. Then he began shivering. I covered him completely with the blanket and he continued to shake with chills. I called for the nurse and her response was to give him an extra blanket as magnesium would not cause chills.

I was a little irritated because so far our nurses had been good about letting us know in advance of something. I am not sure if this one was having a bad day or just had a different style. Normally a nurse will tell us if we can expect platelets, blood, or anything else during the day or as soon as they are made aware of it. Had I know that he was going to get something this afternoon I could have just as easily have gone to do laundry tomorrow.

I didn't like the idea of an extra blanket because I thought it was important to know what was bringing on the chills. Of course Pete was no help because she kept asking him how he felt and he'd say he felt fine. I suggested that she take his vitals to see if anything was off or if he might have a fever that was causing the chills. His white cell count is extremely low right now.

He didn't have a fever, but his blood pressure was unusually high. She still didn't act as if there was a concern, but I kept suggesting there was a problem now that he was under two blankets and still shaking. She asked if I would like her to call the doctor and I replied that I would. A few minutes later she was back with another nurse and a collection of items to take blood cultures and cultures of his port.

When the nurse switch occurred at 7:00, the girl came in to take his vitals and we found he now did have a temperature of over 100 and his blood pressure had risen to 173 over 99. Not good.

Luckily the night nurse is the same nurse he's had for the past two nights and she took all of this very seriously. She was going right away to talk to someone about what to do about all of this. She was also very calm and reminded us that we've been expecting this since he's bottoming out on his white count and prone to infection.

Friday, 10/3/08

This day started out surprisingly well thanks to a really special nurse who is a recent U.S. Citizen and proud of it (that's an understatement).

Peter took a sleeping pill last night and slept very well. I was very tired, but kept getting my sleep interrupted with loud talking and laughing in the halls.

Nurse S. has a special talent of making patients smile and laugh. She has a beautiful Mediterranean beauty and accent from her home country of Lebanon. She was talking to Peter and then used the phrase "trust me" and with her accent Peter just fell in love with it. He wanted her to repeat it again and then began speaking to her with the same accent. She asked him where he was from and I had to point out that Peter does a lot of impersonations and that's one of his favorites. I didn't mention that it from Bullwinkle with Boris and Natasha. They went back and forth and we were all cracking up with tears in our eyes. Peter was doubled over with laughter.

We also learned that due to her recent citizenship she if very interested in politics and excited that this will be her first election to vote. I was surprised since normally I have always been taught and followed the rule of no discussion of religion or politics, but this nurse was very passionate about her choice for the upcoming election. We also learned that any subject with which we talked she was full of passion.

We were most impressed with the single fact that when I asked her where she was from her response was "America!" She let it be known that she was an American. That is exactly what we'd like to hear more of rather than people being so quick to tell you either about where they are originally from or what their family history is and no one that I can remember has ever stated to me that they are an American. I think I smiled the rest of the day about this.

We have a favorite auto parts person back in Roanoke who loves to go back and forth with Pete and various voices when he comes in to buy parts and I could just hear them in my head doing their Boris and Natasha voices today. Big O, we miss you!

Pete had dialysis today and saw his kidney doctors and oncologist. We learned that repeated calcium in the kidneys can scar them and if they become scarred from calcium it can cause more permanent failure. Myeloma eats out your bone and deposits calcium in your system to go through your kidneys. Plus I was giving Peter 1200 mg of calcium every day since we visited the UT hospital at the doctor's orders, but there is no way of knowing if this had any impact on his current situation. Everyone has agreed that was a bad call for the doctor to make.

Our night nurse tonight is a dear. She was thinking about different aspects about us on her way in to work and spent time visiting with us and hearing some of 'our story'.

The weekend should be pretty low key. Monday afternoon I'll head to Virginia for the week, which will be hard to be away from Peter for so long, but I feel he is in good hands or I would not be able to leave. I haven't felt that way at any hospital in the past and it's a good feeling.

Thursday, 10/2/08

After spending all day yesterday on insurance issues, I was able to provide the appropriate information to our doctor. He said that they would've gone ahead with everything anyhow, but forwarded my information to the right people. I was impressed that he'd handle this on his own.

Normally I go do laundry during times when Pete has dialysis, but with the dialysis in the room yesterday and the insurance problems I didn't leave during the day yesterday. So I waited until after dinner to leave the hospital. Pete searched eBay on my computer while I was gone. I brought him some chocolate when I returned.

I thought he would sleep the rest of the day yesterday after dialysis and he started out that way, but shortly afterward he was wide awake and acting a lot more like his old self. He sat up the rest of the day and didn't feel like he could go to bed at all when bedtime came so he asked for a sleeping pill for the first time here.

The sleeping pill didn't seem to phase him at all. I felt like I had a sleeping pill and slept pretty soundly. He was really tired this morning, but couldn't go back to sleep after some of the early morning interruptions.

We got up early to get showered and dressed before breakfast arrived. Thursday is the big day of rounds and big doctor day. We were all ready and waiting. We sat around as if the Pope was coming and joked about it.

We didn't see any kidney doctors at all today. The big doctor came around and was rather friendly with Pete. Pete had gotten such a big kick out of the way he looked last week and he had asked around if the doctor had a motorcycle because he reminded Pete of some of his past days and was pretty sure the doctor was a rider. Pete asked the doctor today flat out what kind of bike he had and then got really excited and animated when he learned the doctor had a Ducati! Pete told him that he used to have one too. Pete told him that he bought me a small Honda and I pointed out that I hadn't learned to ride yet. The doctor looked at us and said that I'd get there and we'd have to go riding sometime. It was something else.

The physical therapist (PT) guy came in today and for once Pete was not gone to a test, dialysis, or in the process of getting a blood transfusion. He was sitting in the chair. Since Pete was feeling pretty good he agreed to go for a walk around the halls with the therapist. Then they worked on some exercises. Pete seemed to be almost energetic, though he denied that. Compared to the way he's been for the past few weeks I see a real difference.

The PT guy was a big help in a number of ways. One, he was able to switch out our low easy chair in our room for a nice high-back and higher level recliner. What a big difference. It's easier for Pete to relax in it and to get out of it. He seemed to be interested in Pete personally and they hit it off so I think Pete enjoyed their time together talking about the baseball playoffs and other guy stuff. That will surely allow more interaction for therapy.

We also learned that exercise is extremely important to the doctors here. They can't stress it enough. Since I've heard some nurses talk about patients that don't want to get out of bed or make excuses to exercise or have family members that make excuses and the PT person also mentioned these types of challenges, I can't imagine why there wouldn't be an agreement or contract to sign when you come here that you are willing to do all of these things. Why waste people's time if you're not willing to give yourself?

After lunch I made a short trip to the post office. Last night it was too late to go get my mail. Today I had an envelope of mail that our house sitters had been nice enough to put in a big envelope and send me that was prior to our forwarded mail. I still have yet to see any forwarded mail.

I stopped briefly at an estate sale. It was the most well organized sale I've ever seen. Most of the items were very expensive though, certainly not yard sale priced to just get rid off. All of the items were very high quality. Everything in the house was for sale right down to the bath mat. There were some very nice dressers and chest of drawers that I really would've liked to buy, but I could only fit one in the back of the Cruiser and I knew I couldn't afford to spend the money. I did buy two small items to send to my son and his girlfriend in China.

When I returned I found Pete and the PT guy sitting looking at stuff on eBay on my computer. They had been talking about what I do and the fact that I'm going to be away from the hospital next week to do some training work. They chatted for quite some time because there were not many people to receive PT today. Then they went for another walk around the floor.

Pete asked for a better sleeping pill tonight and it seems to be working. He is very soundly asleep finally and I'm going to be close behind bed myself.

He's getting two very painful shots each morning and each evening in his belly for the growth factor that will help him overproduce stem cells. This will go on for a good many days until his white count bottoms out near zero and then climbs again to an over high level of about 30. At that time they will begin the collection process.

After the collection process they will do tests to see what level of Myeloma is still in his body. If they believe it to be too much, they will give him another cycle of chemo (the mix of all the drugs he received last week) before giving him his stem cells back. Unlike what we did in Richmond two years ago, they want to be sure that his body is rid of as much of the Myeloma as possible before putting the cells back. That is one of the reasons that they have such a long survival rating for patients. The other reason is that they continue after transplant with maintenance drugs and don't just send you home like they did in Richmond. With all of this knowledge, we know that Pete will do well and have a lot of years of event free survival to enjoy. He's already making a list of things he wants to accomplish when he gets home!

Tomorrow will be dialysis. With his white counts so low, I suspect they will come to his room again. He has been completely taken off any IV fluids and is only taking in what he drinks except for platelets and a blood transfusion today. He has been producing more urine than in the past several days and it looks like a little better quality to me. I'm anxious to see what his labs look like in the morning.

Aaargh! Insurance!

Everything has gone so well here and everyone has proven above and beyond themselves in putting the patient first. This morning they told us that because Peter's counts were so low and was in danger of infection the dialysis would be done in the room.

While the dialysis nurse was setting up everything an insurance lady came into the room. She said that because Peter had Medicare that his transplant was not covered and she wanted us to sign a paper to be directly billed for all costs.

I started getting my defenses up, but remained calm and firmly stated that I had already gone ahead and gotten the pre-approval and sent everything to our new patient coordinator on the clinic side. She proceeded to tell me that she had called Unicare (our Medicare supplement) and that they told her they follow Medicare guidelines and that Medicare guidelines only allow one transplant per lifetime. I again explained that the information was incorrect and that even Medicare will cover a second transplant if it was a relapse.

Things started to get heated and I started to get angry and defensive. I could see that Peter was wide awake by now and nervously paying attention to this conversation. I wanted to difuse the situation and keep him calm.

I explained that our coordinator had everything via email and that she had given everything to her insurance people and they should just check with them. Instead of dropping it and talking to her, they kept on. I asked them flat out if anything had been done since the approval is a 3-week process and they said there was nothing they could do. I asked them if he was not going to receive the treatment that we had pre-arranged and travelled so far for and they said that they could not allow any treatment to proceed without signing to be direct billed. I asked them again if they were going to stop the stem cell collection that was getting started and deny Peter care and they said they would unless an administrator told them otherwise. I had enough and asked them to leave!

I was really in quite a state and worked up and was very mad that they would come in here and upset the patient.

The dialysis nurse came in while I was trying to make calls to get things straightened out and while Peter and I were talking. He gave us some suggestions and I called the clinic to ask for help in what I had sent them.

I finally got in touch with our insurance company and they verified coverage and already had approval for Huntsman. They said that UAMS here had never done anything to get started with approval. They were going to look everything up and call me back to let me know what the minimum amount that could be done to get this approval sped through would be.

We have been expecting someone from insurance or a financial person like the ding-a-ling at the other facility to see us, but in the 10 days we've been here we didn't see anyone until now. I have no idea why that is. As soon as I hear something from this nice insurance lady I will contact the Case Manager for the head doctor here and let them know about it.

Insurance also said there would be no reason to stop the collection process because that is not part of the pre-approval for transplant. Only the infusion is part of that from the way it sounds. Their comment was that no care should be withheld for any reason.

I hope to have more to report later.