Saturday, 11/29/08

Well, we are getting nowhere with this nausea. The problem seems to be that there isn't anything consistent. It's not constant nausea. He's fine when he's horizontal. Half or more of the time, he's fine getting up to pee or go to the bathroom. Sometimes though when he sits up to pee he gets a wave and has dry heaves.

No matter how still he tries to sit in the chair, he gets waves and either dry heaves or the feeling that he has to throw up.

He has been in bed all day since 6:30 this morning. He had dialysis and then slept while he got all his IV's and platelets and Benedryl that made him more sleepy. Due to the dialysis, he doesn't have the urge for nature for a long time after dialysis so didn't get up at all until he had an urge at 6:30 this evening. When he sat up slowly it hit him and he started having dry heaves. We went to the bathroom and washed up a little and then he tried sitting in the chair, but he got another wave at 7:30 and 8:15 and then just decided to go back to bed.

One of the good day nurses seemed to think it might have something to do with blood pressure and took his blood pressure sitting in the chair and then immediately standing up and found that there was quite a drop. That's all well and good and may have something to do with it, but it doesn't explain why he gets this feeling sitting as still as possible in the chair.

He's had half a Popsicle since all this started last Sunday. It started with the severe stomach pain and no nausea and graduated to nausea as the stomach pain eased.

They've tried a number of drugs and nothing seems to work except to knock him out with Ativan and let him sleep. That's no way to be after a week now and everyone is complaining that he's depending on this too much and sleeping too much. Everyone wants him up, moving, exercising, eating, drinking, etc.

He has officially refused to take any pills of any kind. That means he can't get his Marinol that was just prescribed to him last night and is due tonight. They say that takes a few days to really work and they are the tiniest of pills. He also takes several other pills that are antibiotics, antifungals, and anti other stuff. Typical for after transplant.

This is getting as old as the whole infection business. It seems to never end and we don't seem to be getting any answers just like the month plus that we spent with infections. It's very frustrating.

This coming week will be one year since he was diagnosed that the Myeloma was back and that he had a torn rotator cuff. He's feeling far worse than then and honestly has not had any good weeks in over a year now.

A piece of good news!

I hope I don't jinx it by shouting it out...

Pete's kidney numbers on his labs today went down on their own for the first time without dialysis. He's still scheduled to have dialysis this morning. He hasn't had any since Tuesday and is not only still within normal limits, but the BUN went down today and everything else remained relatively the same without going up.

His CRP level that they use to measure possible infection is going down nicely too.

His white count only rose by .01 point today, but it is still rising.

Friday, 11/28/08

What a big waste of day today. Pete's white count came up some more and his CRP went down.

We were all awaiting for the renal doctor to come in and review the labs and see Pete to make a call for whether we were doing dialysis today. No one showed up in the morning. The nurses can't give any of his medications whether IV or oral form or blood products right before dialysis because they are dialized out in the dialysis process.

This morning the nurse went ahead and started giving him platelets and everything else because it didn't look like we were going to see anyone soon and if the doc came around late in the morning, they probably wouldn't do dialysis until the afternoon.

Pete had a double dose of medication last night for pain and to knock him out so he got up briefly at 7:00 when nature called and then slept until 11:30. He asked for something for nausea and received Phenergan just after noon.

At 1:00 the renal doctor came by and wanted to see about doing dialysis. I told him flat out that we'd waited for him all day. I realized that to the hospital today and this weekend are considered holiday or weekend like yesterday and things are a little different. I explained that the nurse couldn't keep waiting to give his medication and he'd just had all his IV antibiotics and platelets throughout the entire morning. He said the labs didn't look too dangerous and wanted to examine him. Since he wasn't having fluid overload causing breathing or heart difficulties and wasn't too swollen, he could wait until tomorrow for dialysis.

I asked him to please go ahead and schedule it so that we didn't have to wait tomorrow like today. I passed all the information on to the nurse and she double checked the computer to make sure he did schedule it, which he in fact did.

A side effect of many of the nausea meds is making you sleep so he slept all day. He still had his morning pills sitting and waiting and I really wanted him to try some Jello or something small to eat.

At 4:30 he woke up to empty his bladder and I asked him to please see about sitting up in the chair. It's about 4 steps tops to the recliner from the bed. The movement from that little bit sent him into dry heaves and he looked like he was going to throw up for several minutes, but nothing would come out.

That little episode ruined the rest of the day. He didn't want to take his pills, have a drink, or eat a thing. He dozed off in the chair for two hours and then went to bed.

The doctor ordered a medication that hasn't worked alone to be given on a regular basis through his IV and combine it with Marinol that are basically Marijuana. It's used for cancer patients and aids patients to increase appetite and decrease nausea. I'm hopeful that this man-made Mary Jane will do the trick and he'll be doing better before I have to leave Sunday evening.

Pete on weed! Cool, man.

11/27/08 Happy Thanksgiving

Pete is still having serious side effects from last week's chemo. We are thankful all during the year and not just at Thanksgiving. Today, our bright spot is that his white blood count has come up for the first time. It's been bottomed out for the past two days. From now on it should be doubling each day, which means the stem cells are doing what they are supposed to be doing. He went from .01 to .03. Granted, more like 3.0 is low normal so we have a ways to go, but this is a good sign.

The nurse we had yesterday was new to us. She was pretty tough and kept trying to tell him he couldn't lay in bed all day, that he couldn't keep taking drugs to be knocked out, and that he needed to get up and move around. I tried to very delicately explain to her that this is not the norm for him but that since Sunday when this hit him he just needs this week to be drugged up and get through it. If there was a problem, the doctor would've written orders or done something about it.

She took it upon herself to keep the main drug from him that relaxed him and helped him not feel his stomach problems and gave him a tablet to put under his tongue instead that didn't really do anything. She also brought him some liquid to take that he said tasted like nuts and bolts and refused to have any more of it. She was very demanding that he take his pills as soon as she brought them. Everyone else knows that I will get them in him when he wakes up to urinate. She didn't know or trust me. She also didn't change the dressing on him that I requested.

He finally did sit up for a short time in the chair so that I could get the bed changed and even ate half a Popsicle.
Today we had a nurse that we knew and liked and the charge nurse is one that really goes out of her way to look out for us. They let us sleep in this morning, which was really nice.

Pete got up at 6:3o to go to the bathroom and took his pills. Then we went back to bed until 9:00. The nurse had IV's ready to hang and pills, but was more than willing to let us get up and get a shower first and take our time.

We had a good shower and Pete put his robe on and sat in the chair from 9:30 until almost 4:00. Granted he mainly dozed in the chair, but he was upright. It took him a long time to get the pills down. I had hoped he would try some Jello, but he was just a little too queasy. All those pills on nothing but water in his stomach didn't help much.

He had IV's of antibiotics, blood and platelets throughout the day.

The only concern is that his C Reactive Protein (CRP) is gradually rising. This is a blood test that shows inflammation. This has typically risen when he's had all these infections during his stay here and fevers, but he's having none of that this time. It may be that it's from what's causing the tummy problems or from the cancer or any number of things. The test doesn't really tell much, you need more tests to pinpoint. If it continues, we'll need to have a CT Scan done which he's already refused once.

This was the first holiday that we've ever spent in the hospital. We've been very lucky so far. I had been optimistic that perhaps they would bring around a guest tray of traditional holiday food or something from volunteers, but they didn't. Peter has been switched to an all liquid diet of broth and jello so there is nothing for me to eat from on his tray.

Still, having the first sign of recovery is very good.

Tuesday, 11/25/08--Major into after chemo effects

Still having major pain from top of throat all the way through bottom end. Bathroom 'problems' started today to add to the misery.

Peter had dialysis today. Yesterday was a fiasco and he never did get it as scheduled. No need to go into the details.

We only got sleep in one-hour bursts last night and are both miserable beyond words today. I asked the doctor for some assistance at putting some things off to day time hours. He told me that these were minor problems and we need to focus our attention on the bigger problems. I tried to explain that lack of sleep is a big problem and known to affect the healing process, but it seemed that no matter what I said it came out wrong or was disregarded. He said that when such time that we become outpatient status, we can get plenty of rest.

Typical night right now.

• 8:00-9:00 PM night nurse assessment; go to bed
• 10:00 pills
  
• 11:00 vitals
• 12:00 IV antibiotic
• 1:00 IV antibiotic over and line disconnected
• 3:00 vitals
• 3:30-4:30 blood drawn for labs; on top of this, right now they are drawing blood cultures which take extra long to get everything done for this
• average 2x to urinate during night
• at some point each night or every few nights someone comes in to empty the sharps container
  
• 6:30 new shift comes on
• 6:30-7:00 AM vitals
• 7:00-7:30 trash gets emptied in room; inventory person comes in each day and scans equipment in room
  
• 7:00-8:00 new shift nurse comes in to assess, give pills, dialysis begins when scheduled, renal doctor visits; nutrition delivers breakfast
  

The days are a constant mix of vitals every 4 hours, IV's of antibiotics, trips to bathroom, getting up to urinate, doctor visits for review, pills dispersed throughout day and night, Physical therapy stopping by, dietitian stops in once a week, some other visits by various hospital personnel. Add to this a level of insanity, miscommunication, cleaning crews, and lately construction crews to really turn this all into a daily 3-ring circus.

Sunday, 11/23/08

Today Peter started feeling the effects of the chemo he had last weekend. It's time.

He's having terrible stomach and throat pain. He's says it's burning. It hurts to take even a sip of something to drink with pills. We've tried water, ginger ale, and warm tea.

This afternoon his nurse suggested that he try a pain killer or better yet the relaxant, Ativan that he's had before. She gave him a 1mg does via is line and he was out within 15 minutes. It lasts about 6 hours, then he was up and in pain again until I could get the night nurse in here to give him some more. I suspect that he's going to be using this around the clock for the next few days until we can get past this.

I was able to get some microwaved chocolate ice cream down him tonight. He said it was the only thing that didn't burn. It was soft and not super cold so it felt good to him. He may have to live on ice cream for a couple of days.

He will have dialysis on Monday, Wednesday, and Friday of this week.

Saturday, 11/22/08--2 month anniversary of hospital stay

We arrived here and were admitted to the hospital on September 22. Today marks 2 full months that we've been here. We are really getting anxious to escape. We are told that kidney function will play a big role in that decision, but first we have to reach the bottom on white count which should happen tomorrow or Monday. Then we have to get back up to normal. The last transplant that he had in 2006 took 10 days from transplant for that to happen.

Dialysis has come to the forefront recently. They don't recommend him having dialysis within 24 hours of his stem cell infusion and don't want dialysis during the final day of chemo. Because of this, they gave him lasix after the stem cell infusion to get rid of as much fluid as possible. They insist on giving him lots of fluid to help push the stem cells into the bone marrow where they need to go to start living and growing and setting up their new home. He was begging them to stop because he was getting so bloated. That really doesn't have anything to do with kidney function, but is a common reaction he has at our home clinic and hospital when they try to push lots of fluid on him.

He was very full and miserable all night Wednesday night and was up several times between urine output from the lasix and from feeling the need to let out a good belch.

Thursday morning started off all wrong. We were so short on sleep and I was miserable from it. Everything I said came out wrong and was taken wrong. There had been some changes in orders that no one made us aware of and I snapped at people that were trying to do different things. This got reported to the charge nurse who had to come in twice. I was very embarrassed and ended up apologizing to a lot of people.

In addition to not getting much sleep from all of this, when they came to take vitals and draw labs in the middle of the night the toilet got stuck when it was flushed. They had to call maintenance. It eventually stopped, but maintenance wanted to look at it anyhow at 5:00 in the morning.

I mentioned to the maintenance man that they should have this room on their list anyhow because the shower light was reported about 3 weeks ago as being burned out and the sink outlet hadn't worked since we moved into the room. I found myself wishing I'd kept my mouth shut as in no time he was back in with a ladder and changing the light bulb. So we really didn't get any sleep!

While we were eating breakfast Thursday morning, an electrician came to put a new outlet in as well. So now we have a new and improved room.

On top of all this insanity, the charge nurse and head nurse came in shortly after this to inform us that we were going to have to move to another room temporarily while they had new call lights installed in our room. They were working on this about a month ago and I thought they did all this while we were in dialysis. We had a new call button and we didn't see anymore workers. I explained that we needed to finish getting dressed and that dialysis would be coming to the room in about an hour or so. They promised it would only be for 30 minutes.

Well, there is no way that it was a 30 minute job and our nurse didn't even know we'd been moved. We were put in a much smaller room on the other side of the floor and ended up having to do dialysis there since our room then had to be totally cleaned before we could move back into it.

I hadn't planned for a long stay so didn't really bring things that we needed and couldn't get back into the room either. It just added to a crazy day. That's typical of the way things go around here way too much.

The renal team came to see us during dialysis. The team rotates every month so every month we get a new regular doctor and a new renal team. We've been here long enough that this is getting really old changing all the time, but that's what goes on in a teaching hospital.

This team has been the best one yet and I hate the fact that they will be leaving in another week. They told us that they have been honoring Peter's wishes of doing dialysis on an as-needed basis, but in doing that when he does get dialysis it's badly needed and takes a lot out of him to do it. They wanted to offer an option for us to discuss of doing it more often and slower and not be so hard on him. We talked about risks of becoming dependent on dialysis and they told us that having dialysis had no impact on kidneys getting better or worse and there was no such thing as becoming dependent due to dialysis.

Peter wanted cereal, milk, coffee, and pudding for dinner and that's what he had. He took some pain pills and we both went to bed by 8:00.

Friday he ate a big breakfast and then was complaining about a lump in his tummy. They gave him a pill to relieve gas that did nothing. He has had this problem before when he's had a lot of medicine. He sat from about 9:00 AM until 2:00 PM trying to be very still and let this pass. He finally went to bed.

Saturday he put out more urine at once than I've seen him do except maybe on lasix. We knew from our discussion with the renal team on Thursday that he would probably have dialysis today. Our nurse was going to let us know when dialysis called. We took a shower and were getting dressed when the renal doctor came in. I asked her if we were doing dialysis today and she said we were. Pete was just getting started on breakfast while the nurse was coming in with platelets to give him, then the dialysis nurse showed up! They couldn't send the platelets back and I insisted that Pete have a chance to have some breakfast.

I asked if the nurse had called and got a flippant reply that "sometimes they call and sometimes they don't". Typical of the lack of consistency at this hospital. I pointed out that the renal doctor had only been in 5 minutes before and since no one had called to say they were coming up none of us had any way of being prepared. She didn't have any apology or anything to say. It didn't seem to phase her.

Pete ate his cereal and decided that he didn't want to rush to drink his juice, finish his milk, or his hot tea that I'd just made for him. The platelets finished and the nurse was getting agitated that our nurse had not come back to unhook him or take his vital signs. I explained to her that the nurse is probably the best one on the floor and is probably busy with another patient at the moment. She still went out twice to the desk to ask for her to be paged. I understood she needed to get started, but thought she was really being rude.

A renal doctor on call for the weekend stopped by and mentioned that she saw him a couple of weeks ago. After some conversation I corrected her facts to let her know that he was on dialysis because of Myeloma and that we'd been here since 9/22/08. She really didn't know anything about him. We talked more and I filled her in on a lot that had happened regarding dialysis since our arrival and his condition. She shocked me and angered me when she said he only has a 50/50 chance of ever getting off dialysis. We talked about the dependency and she said that while dialysis will not cause you to be dependent, the longer you require it the less likely your chances are that you will get off of it. She said the longer you are needing it, that you are probably needing it because your kidneys have been damaged to the point of no repair.

I don't buy what she is saying and honestly I don't want to buy it because we have managed so well without dialysis even when renal doctors in Roanoke threatened us and tried to scare us and tell us that we needed dialysis or would need a lifetime of dialysis. The only reason that his kidneys got this bad is because of the quack that instructed us and our doctor to not treat Peter so stem cells could be collected. I have not told him what she said, though probably will at some point or he will read it here as he does like to review the blog every once in a while.

Peter was sleeping as usual through dialysis and I decided to go out for a little while just to drive around to find something to do away from the hospital while he had someone with him. I was hoping he wouldn't have the need to go to the bathroom during dialysis since they can't unhook him and since I was gone. He did fine.

The weekend doctor for the floor came in while I was gone. Both Peter and the dialysis nurse told me that he was upset with the potassium level from the labs and ordered a drug that starts with 'kay' and is a nasty brown liquid that causes you to have immediate diarrhea which is how the potassium leaves your body. Pete refused and the dialysis nurse tried to explain to him the the potassium would go down with dialysis and that was one of the reasons for dialysis. I don't think he knew anything about dialysis and ordered the liquid anyhow.

Our regular nurse had brought it in and tried to give it to him and he refused and the dialysis nurse refused because she said if he had to run to the toilet he would be unable to while he was hooked up.

I brought back some Taco Bell food that we'd been seeing on commericals. I'm not sure I've ever been to a Taco Bell because I always considered their food sub-standard and always opted for other Mexican food. I didn't know if he'd want it or tolerate it, but after dialysis he gobbled up a taco, an empanada, and a bunch of loaded nachos and had some Coke.

He sat in the chair and dozed while he got more platelets and his IV antibiotics. We both are going to bed at 8:00 tonight.

Wednesday, 11/19/08---Stem Cell Transplant!

This morning Peter received 2.4 million of his own stem cells back in a period of about 15 minutes and it was all over. They had him suck on peppermints to avoid the bad taste of the preservative that also creates a terrible smell for a day or two.

So far he is doing well. He is tired, but he's always been tired during this hospital stay so that is not unusual. He is not suffering any side effects.

When he received his stem cells in 2006, they were just barely not frozen and were infused back into him almost slushy and made him very cold. Here they thaw them out completely first before bringing them to your room. How nice.

He's had a lot of fluids today and is feeling rather bloated. He doesn't have any visible swelling and cannot have dialysis for at least 24 hours after transplant so the earliest they can do dialysis is tomorrow afternoon. They did give him some lasix that should help relieve some fluids.

This time next week will be the real test of how he feels and we're both very hopeful that we will get through this with minimal problems.

They did receive test results from the port they removed and it did test positive for one of the bacteria. The cultures they have done since then have not shown any bacteria so the mix of antibiotics must be working. They removed him from isolation today. A small amount of the staff here followed the directions on the door for isolation anyhow so I don't know that it makes a big difference. The biggest advantage for us is that now the meal tray gets brought into the room. Before under isolation they would leave it outside and we'd never know it was there because no one would tell us they were leaving it.

They also did away with guest trays so I'm on my own to share Peter's meal or go spend money on my own food. I think it's a crappy policy. They tell me that each floor is charged and the floor doesn't want to spend any of its budget on a guest tray for anyone because that leaves less money in the budget for medical supplies needed. And they certainly waste plenty of those!

I have lost about 14lbs. since I've been here so it's not all bad!

Tuesday, 11/18/08

We've had a lot of misinformation today and some changes in plans yesterday, which is why I waited to make a post until I had 'the facts'. I don't take hearsay, gossip, or rumors as facts.

Monday Pete's kidneys were clogged up as expected with the cells that the chemo was killing. Even though he had dialysis on Friday, he had chemo Friday evening, Saturday, and Sunday and really had to have dialysis before getting Monday's chemo.

As it turned out, he was gone longer than anyone expected to dialysis but due to some last minute clearances that had to be just right on the last of the chemo and the preparation of the stem cells they had to wait until today to make sure all the i's were dotted and t's were crossed as they say.

It's a shame that so many nurses that are complete professionals choose to pass on information from one shift to another that isn't fact. I started the day today ready to go to battle over a number of issues that we were told first thing this morning. I demanded to speak to the doctor and asked him if any of what I was told was true and discovered that it was all incorrect. That's why I went to the source.

This morning he had his daily IV antibiotics followed by his chemo. He didn't get the oral medications that he's been taking each day with chemo because 4 days was the run on them and yesterday was the fourth day. Today was to be a day of rest and transplant was scheduled for tomorrow.

Timing was important because the melphalan had to be the very last drug, which is one of the two most powerful that he received in the mix. It also couldn't be given until everything was set for tomorrow's transplant or it could kill him. It also had to be given the moment it came up because it expires very quickly.

The effects of all this chemo won't be felt for several days to a week. It's almost like an aftershock of an earthquake. It's not a problem going in, but instead a problem many days later. Hair loss, nausea, diarrhea are the main concerns along with possible mouth sores and of course low blood counts.

Pete received a big surprise from WVTF, the NPR radio station where he volunteers his time in Roanoke. They all got together and sent him a card that everyone signed. He was surprised and thought it was one of the nicest things someone did for him. Thank you, WVTF for making his day!

About 9:30 in the morning tomorrow Pete will be getting a small amount of his stem cells back. There is only one bag that is 'clean' with no infection contamination. We didn't know it, but there's no rule that says how much you have to get back. We know they collected and received 4 million stem cells in 2006 in Richmond. Here at UAMS, they can do this chemo and not give any back, give a few million back, or give several million back. The amount they give back along with the growth factor shots (like he received for stem cell collection) have to do with how quickly he will bounce back.

In Richmond they didn't give growth shots so it will be interesting and perhaps amazing to see how this all works on him.

Sunday, 11/16/08

I arrived back from MA and was in the hospital room at 11:30 Friday morning. Peter had gone to dialysis so I didn't get to see him until 2:00. I couldn't wait to give him a nice big hug and kiss!

The doctor had called me on Thursday when we had ended our last day of class and I called him back within two minutes. I expected to reach him or have him return my call. I don't have his direct number like I did with the last doctor that was assigned to us. All I can do is to call the desk and ask for them to transfer me.

I never did hear from him and he left me another message while I was on the plane to Little Rock. It was over an hour until I saw him Friday when I asked them to page him at the desk. They had the same result with only being able to leave a message.

When I finally did get to meet with the doctor, he said they had already signed the forms for chemo and transplant and were waiting for me for the past 24 hours to get started. He believed that they had the infections under control after removing the port. He didn't want to go back in time and explain to me why he had to be put through this for all of October and half of November. I have a lot of questions.

He showed me some labs and said there is a critical need for us to get going on this because the bone marrow biopsy that we'd done the week before showed 90% Myeloma in the bone marrow. When we got here there was 95% involvement. I questioned this because he didn't get the bone marrow biopsy after the chemo and our other doctor assured us that it would be much lower. This doctor said that even if it was lower then, the fact that it jumped up to 90% in that short of a time showed that it was a matter of life and death. The Myeloma was aggressive.

I had to wait for Pete to come back from dialysis and get settled in so we could talk. He thought they could wait until Monday to start and I thought they could wait until Saturday, but the doctor wanted to start the very moment we signed and wanted to start this afternoon.

He sent the pharmacist up to show me the drugs and talk about the schedule for the next four days. Pete and I talked and he wanted to go full speed ahead so I signed the form and they started ordering drugs.

We have had two days now and no ill effects. Today they said his levels to indicate dialysis were up, but they don't do dialysis on Sunday's and they don't want to do dialysis and flush out the chemo they are putting in him so he will not be having any before Tuesday. He will probably have to have it in the room since his white counts are starting to drop already.

The other fact is that due to low platelets he has had two areas of a hematoma, which look like a huge ugly growth. It is when the blood goes outside the blood vessels. This happened at the site where he had the bone marrow biopsy and where they took the port out. Because of this he is getting extra blood and platelets today along with his antibiotics and chemo. It is the nastiest and scariest thing I have ever seen. It looks like some growth out of a cheap sci fi flick.

Monday will be the last big day of chemo with a bunch of drugs via IV with a powerful punch that will knock the snot out of him and make the last few of his hairs fall out. Tuesday he will not have any chemo and may receive dialysis. Wednesday they will put the stem cells back in. Then we will begin the road up hill to recovery over the next couple of weeks. I have to leave for a business trip 11/30-12/5, but hopefully he'll be on his way back before I leave with no complications.

The steroids he's been taking have been making him ravenously hungry. He's eaten every meal, chocolate like crazy, chocolate cake and ice cream and chips between meals.

Wednesday, 11/12/08

I received a call from Peter's doctor today right after we broke from my class for lunch so the timing was perfect. He wanted to talk to me about removing the port that Peter has had since 2002 right after he was first diagnosed. He wanted my permission to remove it because he and the director believed that the chamber in it is where some of this infection problem seems to be trapped.

We discussed it and the fact that it hasn't been accessed since 10/6 except this past Saturday night when they couldn't get enough blood from the external port for all the labs and cultures that needed to be drawn. It does not sound like a sure bet, but there are some indications that infection is located there because of the length of time he's had infection (since 10/4) and the fact that there was some indication from his recent PET Scan that it may be infected.

At this point I'm just ready to move forward in some way. I hate like heck to give approval for this to be removed since he's had this since 2002 and it has worked so flawlessly. It makes me mad that it never caused any problem until we came here. I gave my approval because we have to try something.

They removed the port this afternoon. I was worried because after more than 6 years the scar tissue around it was surely terrible and removing it could be a problem. Also with his platelets low it would be risky. But I talked to Pete after my class was over and he had sent my mother out looking for Biscotti and he was there in the room alone. He said it came out without a hitch and he sounded rather relieved as I was that we have now narrowed our search for this terrible long list of infections.

They will wait a few days as I understand it and see how he reacts and continue doing blood cultures. They have been getting positive blood cultures from his external port and if it comes down to removing that one I made it quite clear to his doctors that there was no way I would approve a third one being placed. Enough is enough!

The first external one that was placed for the purpose of dialysis and for stem cell collection became infected. The doctor that pulled it out said that these are notorious for becoming infected. I do know that there was a real battle and inconsistency in the dressings on it and it was more often than not partially exposed.

They were originally to have left the first one out for two days minimum while giving him antibiotics, but due to a real mess in communication it was barely out for 24 hours and a new one was put in to begin stem cell collection. Because of this rush and not following through, in my opinion, this resulted in all the stem cells he collected being contaminated.

Also, the first infected one that was removed was to have been sent to the lab to be tested so they would know for certain that it was the culprit. The nurse that was assisting the doctor in removal tossed it before I could open my mouth. Perhaps if it has been tested we'd know for sure and wouldn't be removing the other port without being 100% positive.

One more day and then I'll be back in Little Rock on Friday and won't need to travel until the first week in December

I was certainly impressed that the doctor would actually call me and discuss this all with me. I feel that perhaps he's in better hands than he has been.

Monday, 11/10/08---Things are looking worse

I am in Boston (or right outside of it) today. I called the room twice today and checked status with my mother. She told me that the doctor believes Peter's current poor condition is a result of an infection. She said he had a chest x-ray, platelets, a breathing treatment, was on oxygen, and was really too weak to want to talk to me on the phone.

I then called his new doctor this evening. I'm glad I did because he gave me the names of the bacteria that have tested positive from the blood cultures over the past few days. They are the exact same bacteria that he's been fighting since October 4th!

He said that he and the director discussed this and the recommendation is to do dialysis and then remove the line and give him a couple of days without it and then put a new one in. I just about hit the roof. As it turned out, he had no idea that this is exactly what we did last month except we were supposed to leave it out for at least 48 hours and it only got left out for 24 hours before another one was put back in and then he was rushed for stem cell collection bacteria and all. He said he would discuss this with the director again and mention this. I also talked to his former doctor and asked him to fill in the new doctor on what happened.

We were told a week ago that the stem cells they collected were good with no bacteria with the exception of the day he had a fever. Now it turns out this was wrong and simply not enough time had passed for the cultures to grow. All the stem cells he collected are infected!

The doctor said that we could sign a consent to still use those and then they would give him antibiotics afterwards. I said there is no way in hell that I will allow that. If they could not get rid of these bacteria after more than a month, what would make them think that they could get rid of them after putting them back in his body? Are they crazy?

Right now Peter is the sickest and weakest I think I've ever seen him. His body has been fighting infection of several resistant bacteria for weeks and weeks now. The one antibiotic and class of drugs that they know would take care of this is the one he has shown a serious reaction to and would cause possible death to give it to him. I'm not receiving any confidence that they will be able to find a drug to beat this once and for all.

They have been wanting to get him started on the chemo, but I do not think I would allow that to go forward based on his current condition. Even if they believe it is safe, my gut tells me that it would just be too much for him.

I just don't know how we are going to get out of this. It feels like a bad dream that won't end and we feel like we're never going to see home again.

Critical Emergencies

We've had two very critical emergencies. One took over the entire day Friday and Pete has no recollection of it. The second one took place today.

Each instance began with chills and had him shaking so badly that he made his heart rate go through the roof. They did EKG's and issued emergency medicines. He went into fever. He has a heart monitor. He has refused any other cardiac testing at this time.

He has not eaten all last week or even had anything to drink other than water due to the schedule they've had him on.

I tried to cancel or delay my trip to Boston, MA but could not even so much as get Delta Airlines to work with me at all. I called my mother to drive from Tulsa, OK to stay with Peter to be his advocate in my absence.

I'm very anxious and stressed and don't know what this is and no one else does yet either. I am in MA now. I'll return to Little Rock on Friday.

Saturday, 11/8/08

Extremely stressful couple of days.

Pete was fine when I arrived Thursday night, though he was swollen in the legs and feet and somewhat in the hands. He took a sleeping pill and pain pill and said that he has been doing that because one of the nurses recommended it so he doesn't have trouble falling asleep again after being waken so many times during the night.

Friday morning I met two of the kidney team. I was impressed that they were so receptive to his wish to get off dialysis. I showed them his legs and feet and suggested that he might need dialysis. They said they were going to hold off and perhaps do it on Saturday. They said his 'numbers' weren't too bad. His new team is all female. Finally, some brains!

Thursday, 11/6/08

I drove back to Little Rock this evening since I finished up teaching a little early today and wanted to get back to Pete.

It sounds like he has had a heck of a week since I've been gone.

He's gotten a new team of kidney doctors. He's gotten a new Myeloma doctor. He's done collecting stem cells and has been down about collecting 10,000 or so and not 20,000. Yesterday he had collection all morning and then was taken straight to dialysis and didn't get back to his room until 8:00 last night.

He was supposed to have a bone marrow biopsy today, but they didn't get here to do it and they did a PET scan instead. Tomorrow they are to come early and do the bone marrow biopsy.

There is a big rush for this so they can re-stage where he is and prescribe the chemo for before transplant.

He visibly has a lot more fluid on him than when I left four days ago. His hands, legs, and feet are huge and really took me by surprise especially since he had dialysis.

I'm anxious to meet his new doctors and find out what is going on and make sure they understand our insistence about being involved in everything.

I'll post more as soon as I know more.

Tuesday, 11/4/08

I am writing this from a delightful bed and breakfast in Stillwater, OK. I am here this week doing some training.

I talked to Pete yesterday and he said that Saturday's count was another 1.2 million. We had guessed that. He also said the PT guy had walked the floor with him and then taken him outside in a wheelchair to enjoy the sunshine.

Today he sounded a little down besides just being tired. He said that yesterday's collection was only 500,000. We were told that when it gets to that number collection will stop if it goes under. Today's number may be under that and this may have been the last day. We will not know until tomorrow.

He's at least collected 10 million stem cells. That's not too shabby for someone with his history. The goal for everyone is 20 million.

If and when collection is over, then he will immediately begin his four days of chemo. It's expected to be stronger than any he's ever had. I'm anxious to get back to him for that reason and hate that I'm going to be gone next week. I hate for him to go through this by himself.

Sunday, 11/2/08

So far we've collected just shy of 8 million stem cells not counting Saturday.

We've been able to reduce dialysis to what we were originally were told that was on an as-needed basis. A new renal team will be starting on Monday. I won't be here to meet them and get them on the right track.

We completed our absentee ballots and mailed them in this week.

I will be in Oklahoma doing some training this week and will return Friday afternoon. I'll then be flying out the following Sunday afternoon for Boston to do more training and will return the following Friday afternoon.

Pete's going to be on his own. He hasn't been receiving any mail or email lately. We do have a post office box that I check weekly.

If you'd like to send him cards or letters to keep him company while I'm gone, the address is

Mailing a Patient
You may send cards to patients in the hospital to this address:

Peter Powell, Room 778
UAMS Medical Center
4301 W. Markham Street
Little Rock, AR 72205

To send an email that will be printed and brought to him click this link.

http://www.uams.edu/patientemail/