Sunday, 7/5/09

Pete is still in the hospital and doing fine except that he really wants to be out of the hospital and really wants to have some time at home. The only reason that he is there is because I can't be with him right now and he can't be alone without a caregiver.

His counts are coming up and this coming week he should have a bone marrow biopsy and PET Scan to see how much Myeloma is in his system now that he's finished this big round of super chemo. He handled it very well with no side effects even though this was a much stronger and very different type of chemo that he's never had.

I spent four days in June in Louisiana teaching a class and drove 7 hours back the night of the 25th to be with him. I came into his room about 11:45 PM and talked with him for a minute and then slept on the uncomfortable pull out bed they have in the new rooms. The futons were much more comfortable. I stayed with him all day Friday and Saturday. I was going to try to leave that Saturday to head for Roanoke, but because it was 101 degrees in Little Rock and I'd just spent the week before in LA with 103-104 degree temperatures I decided to sit it out for another day. There's always a risk of tire failure in the heat and between other drivers and trucks having tires coming apart, road conditions, and the long drive I waited until Sunday afternoon to leave. Pete was happy for me to keep him company though he mostly slept.

I drove 16 hours straight through and arrived home just after midnight on Sunday night. I had to call Cox cable and go around with them about our service interruption. I finally got the Internet service restored so that I could work from home with my new job and we could stay in contact. I was not able to restore the phone service and will probably change phone service this coming week. We are using the cell phone and Skype to make and receive calls as well as my work Blackberry phone.

I picked my son up at the airport Monday afternoon when he arrived from China via Detroit. We had lunch and spent the evening catching up and relaxing. Tuesday we had to make a rush trip to Pennsylvania to my dad's. He was having surgery for a cataract where they replace the lens of the eye and restore vision at the same time. It was quite an ordeal and we drove the 310 miles up there Tuesday evening and then drove 72 miles to Morgantown, WV where the surgery was to be done Wednesday morning. Thursday we had to take him down there again to have the patch removed and by a miracle he could see without the glasses that he'd worn for 60 years.

We planned to leave on Friday since we only had a week left to get things done at home and didn't relish the thought of driving in holiday traffic. Thursday night my father started having severe pain in his eye and Friday he needed to be driven to the hospital again. He insisted that he would be fine even though he could hardly see now and that someone else would be available to take him down the next day if needed. As it turned out, that wasn't the case and the saga is still continuing due to an infection in the eye from the surgery.

During all of this, our 17 year old cat was not doing well at the vet and we may have to make some tough decisions this coming week. I'm dreading it.

We talked to Pete each day and he was anxious to hear how we were doing each day and what was going on outside of the hospital. They have no clocks in the hospital room there and he has no idea what time it is unless he turns the t.v. on and see a time listed. It's driving him insane.

Pete did get to watch some great fireworks he said on the 4th of July from his view at the hospital.

He does not seem to be getting any emails and I suspect that it is because they built the new part of the hospital with a lot of the same room numbers and so there are about four different parts with the same room number of 722. He's on F7, but even putting that in front of the room number has not made a difference in email so I'm simply calling him twice each day to keep him updated and check on his status.

When I return early next week he will be more than ready to be discharged to outpatient status. We'll probably just stay at a motel for a few days until we can find something longer term.

Monday, 6/22/09...More Chemo

Since my last post, just too much has happened and there have been such long days that it's been impossible to keep this updated the way I usually do.

1. Tuesday night at 6:30 PM Pete was released from hospital. We spent the rest of the night waiting for a room change at the hospitality house and moving everything from our second floor room down to the first floor.


2. Wednesday we had a 14 hour day! It was a nightmare. We started at 7:00 AM and hit the clinic for labs, doctor's office, had a bone marrow biopsy, and a PET Scan. You have to understand that every one of these includes several hours of wait time so it's not just that we did those few things, but we were doing those and sitting in waiting rooms and didn't return to our room until 9:30 that night. We went straight to bed without dinner for the second night.


3. Thursday I went to work and let Peter sleep at the hospitality house. I made sure he had his pills and some breakfast. I had to clean the general public bathroom across the hall to where I believe it might be safe for him to get there with his walker if needed and so I could help him in there before I left. The filth was unbelievable. Nothing is cleaned at that place unless a patient or caregiver does it and that doesn't happen enough and with bathroom sharing that is just not safe for patients like Peter and the others there with lower immune systems. I would not allow him to take a shower like he wanted because the floor was worse than some garage floors I've seen. I just couldn't tackle that too.


4. We were supposed to get an appointment for labs and a doctor's appointment for seeing the doctor on Friday. I didn't hear from anyone and emailed our contact from work and got the doctor's appointment. When I asked for the lab appointment, she said she didn't have any orders for that. I assured her that the doctor would want labs done and certainly before he is seen on Friday. She set a lab appointment for 3:30 and the doctor visit for 4:00. This was great because I could work all day Friday and leave by 3:00 to go get Peter. But he didn't have any labs on Thursday or have his line flushed, which I knew wasn't right.


5. Friday he was still really tired, but I insisted he have something to eat with his pills. I laid out his clothes and told him I'd call him to wake him up an hour in advance so he could get ready and I'd leave to get him at 3:00. He was ready and we went right to the clinic.


6. We sat in the clinic for an hour even though we wrote on our check in sheet that we were there for labs before our 4:00 doctor appointment. We were already half an hour late for the doctor's appointment. I asked about this and was informed that they didn't have any orders so couldn't draw the labs! I had a copy of the orders in the car, but we needed to go. I knew the doctor would hit the ceiling. I also knew that after the bone marrow biopsy that his platelets would have dropped and we couldn't let his port flush go.


7. We sat at the doctor's office for over 2 hours and a nurse finally came in and we explained the labs and asked about the bone marrow biopsy. She handed me to sheets which were greek to me. I asked her to explain and she said she doesn't read those and I'd have to ask the doctor. So what good was it to give it to me? She called the lab and sent us back to that building to have labs drawn and the port flushed. They were about to close at 7:00. I told her I didn't want to miss the doctor's appointment and she said they were very behind and there were six other patients in rooms waiting so we would be seen.


8. Getting labs was beyond frustration and I really let them have it. They wanted to go through all their normal baloney and I told them that we were just there to get labs done and get back to the doctor's office and they weren't too happy about that. The tech that does vitals and weights and all actually threw the blood pressure cuff and stormed off. The nurse tried to tell us she had to do blood cultures and all sorts of other things because it was that day of the week for it. I was screaming almost at the top of my lungs over and over that we were just there to get labs per the doctor's orders so we could be seen and he was waiting on us. Finally she just drew them.
9. We didn't see the doctor until almost 8:00 PM! He said that the bone marrow biopsy showed the Myeloma which had gone from 20 to 95% between the end of March and beginning of May had come down to 60 and now gone up to 70% in the past 10 days. He demanded that chemo begin immediately on Saturday. Pete was just devastated and it showed on his face. Not only had he high hopes of going home for a brief stay, but he hadn't even been out of the hospital but three days, of only one of them was any rest. He also said that his platelets were down to 13 and asked if he's had platelets. I had to tell him about the lack of appointments and orders which of course didn't set too well with him. I did request that Peter be admitted to the hospital so he could be watched more carefully and because I would be out of town soon. He agreed and began writing all sorts of orders for an entirely new mix of chemo unlike anything Pete has ever had. It includes and immunosuppresant too.
10. We didn't leave the doctor's office until well after 8:30 and once again were crawling back to our room late. Pete was down because the Myeloma seems to be winning the upper hand and he doesn't want to be in the hospital and he wanted to go home and don't know when he'll ever be allow to sleep in his own bed and relax in his own chair and be around his beloved pets and belongings. We were too tired to eat, but I made Pete some soup that he sipped at before going to sleep and I heated a frozen dinner to eat.
11. Saturday we called the hospital to confirm they still had a room and asked if noon would be too late to get there and get the chemo started. They were ready. I had a couple of errands to run and let Pete sleep and then went to the hospital and got him registered. There was no point in him having to go in to do that too. I returned to the house and helped him get ready and we talked some more. He was still really depressed. We got up to the hospital about 1:00. We basically waited and put up with one thing after another until 9:00 that night when the chemo finally arrived to get him started. I had planned on leaving about 7:00 so I could start loading the car with our belongings. There was a lot of confusion about couldn't do the chemo until Monday, lack of a pharmacist to put it together, doctor on for the weekend didn't' have enough notice, and all sorts of other things that just wore us out. They couldn't find drugs that we provided to them and I had to provide a receipt for them. Then everyone needed to borrow my copy of the doctor's orders. I asked the doctor for them back 3 separate times and never got them back.
12. I packed up most things from the room and rearranged what was in the car until 11:30 PM. I couldn't sleep because the a/c was so cold and we had no control of it and I just laid there and froze and ached like I was sleeping in the snow. I got up at 6:30 AM and finished everything and cleaned the room and made sure we had our food we bought and left hoping to never see that dirty place again. I was at the hospital by 7:45 AM and spent the morning with Pete. It was Father's Day and my son called from China. This new chemo is so powerful that his counts dropped in just the few hours since it started. I hope he doesn't have more side effects because of how powerful this is. Normally we don't see any drop until a week after chemo has ended. I made some arrangements with hospital staff and had to leave for Lafayette, LA about 12:30 to drive for a class I was teaching M-Th. I'll go back to the hospital after hours on Thursday night and stay in the hospital room with him until the weekend when I'm going to have to leave to meet my son in Roanoke to take care of some urgent business. I'm dreading the trip and being away from Pete for so long.
13. I learned on Saturday that I couldn't get into email or voice mail and tried to call Cox, but even though it said they were open until 6:00 and it was 5:05, their recording stated they closed at 5:00. I was fit to be tied. I spent half an hour on the phone with them this evening and they turned all our services off as of last Friday and cannot turn them on without hundreds of dollars in deposits, reconnection fees, and all sorts of other fees I can't afford and don't want to pay when I made it quite clear our situation a month ago. I'm just stressed out to no end and don't know what to do right now.
14. I had to send my laptop computer off for a recall and they said it would be so long that I gave them the house address in Roanoke to deliver it to thinking it would be back close to the time my son came home from China to help us for two weeks. Wrong! It came back a week ago and FedEx has been leaving notices one the door. A helpful friend just happened to notice and informed me. No one else can pick it up for me since it's a valuable item and can only be picked up by a resident of the house with the same address on the driver's license. I'm just fit to be tied.

Tuesday, 6/17/09

So much has happen over the weekend and this week and there haven't been two free minutes to update the blog!

Pete was blessed to have a fantastic nurse that went above and beyond for four days in a row. He went from having to be literary dragged out of his bed or a chair to being able to walk around the room, down the hall, use the bathroom, and eat by himself in those four days. I wrote a recommendation and turned in on her behalf and mentioned to everyone I could. I embarrassed the poor girl, but she deserved the credit.

The doctor told us on Friday that Pete was ready to be released, except that she wanted him to gain more strength and be able to walk across the room. I don't think she had any idea that this would happen over the weekend.

Friday I accepted a job from a company I had been doing contract work for since last fall. They are a fantastic firm and understand completely my time commitments to Pete and are willing to be flexible.

Monday morning was my first day of work and we had planned on having Pete released. I knew it was going to be hard to coordinate everything. I had a very busy day at work and arrived at the hospital at 2:00. By the time I spoke with the social worker and doctor, it was just too late in the day.

We were sure that Pete could not get up the steps to the second floor of the hospitality house and there was nothing available on the first floor. They could not find something else for us and Pete was getting some magnesium that was going to run late into the day. We agreed to release him Tuesday.

I went to work Tuesday and left my cell number with everyone, but when I returned we were no closer to getting discharged than before. I was getting anxious. I had been working very hard and tried to arrange everything I could on top of a busy new job. It just didn't seem to be enough.

One of the nicest things happened in that one of our fellow residents at the hospitality house who was staying on the first floor while her husband had been in the hospital for the past month agreed to move out to a motel since they were going home later this week anyhow so that we could have the room. I just couldn't imagine someone doing something like that for us!

By the time everything was done, we weren't released from the hospital until 6:30. Pete was exhausted and really too tired to even leave. Next week I have to be in Louisiana to do 4 days of training. We had previously thought that Pete would just stay in the hospital getting stronger and then stay over that period before being discharged. But since he had such an improvement, I didn't want to hold him back.

Because of the room switch, we got back to the hospitality house and Pete just wanted to go to bed. Honestly I did too. They still had to clean things out of the downstairs room and then clean the whole room and wash and dry all the bedding before we could move in. I really was too tired to move our stuff downstairs.

I had it pretty much together already and put the rest of the things in a stack to move. I sat with Peter downstairs in the living room and finally suggested that we at least see if I could push him up the stairs and we could just go to bed and move the following day.

About that time the house manager came out and said the room was ready to move into, but we would need to wait on the bedding. Well, all of this dragged out and I did finally get Pete settled into bed about 8-8:30 and I moved things and waited on bedding for my bed until almost 10:00. I was so tired and hurt so badly that I was almost in tears. Two days I had been pushed so hard and this was just too much this evening.

We both went to bed and slept like a couple of logs in our separate twin beds. We really didn't want to get up this morning. We had to get cleaned up, have breakfast, and then be at the clinic for labs by 8:30. We made it.

We were at the doctor's office by 9:45 for a 10:00 appointment and sat there until 12:30 or so. We got a chance to get a few words in about what we wanted to say to the doctor. I think this was in part because he had someone with him. Then he ordered another bone marrow and PET Scan and wanted us back in the office on Friday.

We rushed off to these (and are still there at this writing) and have sat in waiting rooms and had tests done all day and evening. We will be crawling into our room about 9:00 tonight and collapse.

I guess we'll learn more on Friday.

I didn't get to work much today except remotely from waiting rooms. I'll probably spend most of the next two days working as much as possible. I'll leave Sunday for Louisiana.

Friday, 6/12/09

This has been a wild ride the past 48 hours.

Yesterday, Pete was moved from the old hospital back to the new hospital after renovations were complete. I was not with him for the day because I was attending two days of meetings in Little Rock on business. He said that it was like a Chinese fire drill. According to him, the entire day was very insane with a constant flow of people and things going on every 15-30 minutes for one thing or another. He was frazzled when I arrived at 7:15 that evening. When there is so much going on at once, he has a tendency to get anxious.

I had a little bit of a run in with his nurse that had just come on duty because I asked for his labs and then because I had some exciting news for him and the nurse was convinced that the blood pressure that was just taken was wrong and wanted to retake it. I thought we were going to get into a fist fight because she accused me of interfering with them retaking his blood pressure and got mad and yanked it all off and stormed out. I was waiting for the other shoe to drop and have a charge nurse come in and attempt to throw me out. That didn't happen. We had a lot to catch each other up on and I'd never met this nurse before and it really put a damper on the excitement that I was trying to share with Peter about my meetings.

Once I got the labs and was almost reprimanded for assuming they would be on the table like they had been every single day without fail, I found that Pete's white count had doubled and was now over 1! I asked Pete if the doctor had anything to say about when he would need the next chemo and he said she had been in 3 times, but hadn't said anything except that he was doing great.

We spent a couple of hours getting caught up on each other's days and then I went back to our room to get some sleep and let him get some sleep.

Friday I attended meetings only part of the day and then went to the hospital. Pete was sitting up in the chair and watching t.v. His labs were waiting on the table and between he, his tech, and him I was informed that he'd had an excellent day so far. He'd been up early, eaten well, did some walking and marching in place, and been up in the chair the whole day. He was in good spirits and we caught up again on our days.

Pete told me that he asked the doctor about the plan and she told him that as soon as he was able to walk more he would be released, stay and be watched for about a week as an outpatient and then to go home for a brief break and to be strong enough to go through the next chemo.

The doctor stopped in and confirmed this. His white count is really strong and today will be the last night that he will have a growth factor shot. His red count is holding. He still need platelets each day, but that's completely normal.

The nurse he had for the day is likely to have him this weekend too, which will be nice for consistency and she's someone we like. She was extra great today because she encouraged him to get up from the chair before dinner and stand and march in place. He did so and I was really amazed at just how strong he had become so fast. She helped him with some other tasks too and ordered a bedside commode for him to graduate to. She really went out of her way in every way. She said tomorrow the goal would be to march in place three separate times throughout the day on top of whatever physical therapy did. There's no guarantee that PT will come on the weekend. They are generally short-staffed on weekends and often no one comes by to work with him.

He had dinner and we talked and he finally was ready to get into bed.

So, it was a very good day. I had some success with a financial issue too.

We hope we have more good days. One good day makes up for a whole lot of bad days.

Tuesday, 6/9/09 Update

Bone marrow results show Myeloma reduced from 95% to 60% after this session of chemo. Other tests show that the bone marrow is active and able to produce cells like the white cells that Pete is building now.

The results aren't back yet on whether any chromosomes are affected, which will show if the Myeloma is growing.

More chemo will definitely be needed. For now, the doctor wants to focus on Pete getting stronger and getting out of the hospital before any more chemo begins.

He had physical therapy this afternoon and was able to stand longer before sitting in the chair. Tomorrow they want to have him try to take a few steps with the walker.

I have been invited to a meeting with a local firm that I have done some training for on Thursday and Friday morning so will be here on and off the rest of the week.

He slept almost all day because he had a nurse last night that came in several times and insisted on turning on the bright overhead lights and startling him out of sleep. The doctor wasn't too happy about that and was going to write some orders for less interruptions and encourage more sleep during the night to be awake and sitting up in the chair and doing physical therapy more during the day.

There are a small handful of nurses that we generally request not to have that will only draw labs if the overhead lights are on. Everyone else opens the bathroom door and lets the light from there or the door to the room provide light. I'd love to go into the bedrooms of these idiots and turn on a spotlight in the middle of their sleep and see how they react!

Tuesday, 6/9/09

Monday was a very busy day on a lot of fronts, so I didn't have an opportunity to post.

Pete is still doing well, though he was a little more fatigued yesterday. He received blood, platelets, magnesium, and potassium.

His kidney function has improved so much that it's almost at normal levels. It hasn't been that since probably 2007. His CRP was at 15 and normal is under 10. He didn't improve his white count yesterday, but it doubled each day over the weekend. I'm waiting to see today's labs. I haven't seen a nurse yet and there wasn't one left on the table as there normally is when I arrive each morning.

Pete said he needed to have a break of just a couple of weeks at home before starting more chemo. He told the doctor that and she didn't see a problem with that, but said that right now he has to work with physical therapy to get his strength back. She has been a little disappointed I think that he hasn't had any physical therapy with the exception of one day.

Yesterday PT came and had him do some exercises and helped him to get up into the chair and stand for a brief minute. He started hyperventilating at standing, which is not like him. He sat up for several hours in the recliner and then some of the transport people came and lifted him back into bed.

His appetite had improved late last week and over the weekend, but yesterday was gone again. The doctor said that was because his liver function number had increased slightly yesterday and she wasn't sure why, but that she was giving him another antibiotic. She said that would affect appetite.

Physical therapy will be working with him all week. The woman assigned to him is of very strong character and will be tough on him, which he needs. I think it will be good.

We still don't know the results of Friday's bone marrow biopsy. We had hoped to hear yesterday, but hopefully today. This will tell if more chemo is needed once his white count gets to 1.0. The other test with the bone marrow will tell if the chromosomes are normal or there are some out of whack. That tells if the Myeloma is growing.

Our doctor has really been good at taking her time and communicating with us. We've also had the good fortune to have a couple of really outstanding techs or nursing aides over the weekend and yesterday. We'd had several good ones, but last week we got the type that are in a hurry or don't really treat Peter like he is a human. We avoid as much contact as possible with them. We've already experienced their poor handling during clean ups and sponge baths. I'll take care of it myself alone if one of them is assigned. I have even reminded one or two as has Peter personally that he is a human being, not an object!

Now that Peter is awake more, he is now interested in t.v. again. Unfortunately, since we are only temporarily in the old wing of the hospital, there are no remotes for the t.v.'s. We even had two techs look all over and try to find one and call maintenance for help, with no success. So when I am here, I have to get up and down to change the channel or volume. When I am not here, he either has to leave it on one channel and ask a nurse to turn it off when someone happens to be in the room or to have me turn it off when I leave at night. Hopefully we'll move back to the new hospital soon.

I'll try to post more on labs and bone marrow biopsy when I receive the information.

Friday, 6/5/09-What's Next?

Pete was on strike for any tests. He refused the bone marrow biopsy and an EKG the other day. He demanded to see the top doc, who is also his doctor that he sees at the clinic.

We had a number of people that were aware of his wishes and our concerns and questions. The doctor that is assigned to us in the hospital for the month of June, the social worker, the pastor, and the head of nursing. All attended the weekly Thursday conference where each patient is reviewed and spoke up for us.

After the meeting the doctor flew by with our other doctor and the pastor in attendance and a woman who never did identify herself. She wasn't on my good list as she came flying in ahead of the group and turned on the overhead lights blinding Pete and startling us both as we were trying to relax and remain calm before this meeting.

The visit was very brief and fast and the only thing we got out of the whole thing was that the plan is to keep giving Peter chemo and letting his counts recover and then do it again and again and again as many times as it takes to knock the Myeloma down. It was suggested that we should plan to stay here for the next few months with no real end in sight.

We didn't get to discuss options or ask questions and "poof" the doctor was gone. We might not have gotten the information that we wanted to a discussion that we wanted, but at least we know that this is not going to end anytime soon.

Peter is doing better "on paper" with numbers and is actually alert and said that he wants to fight. I told him that I would not deny him that, but that we would need to make some major life changes because we could not continue to survive any longer in the current arrangement.

Physical therapy started coming in and we discovered that he doesn't even have the strength to stand on his own after the past two weeks in bed and out of it. They are close to wanting to release him back to the hospitality house where we are staying, but will have to wait a week or 10 days or more for him to be more mobile.

I met with a social worker and with the head nurse today who both suggested to me that even though the doctor tells everyone they must stay here during the entire time, realistically people do go home and just get what they need at their home clinics while they are recovering counts before the next chemo round.

Today he has had the bone marrow biopsy and will have the PET Scan shortly. Next week we will know those results. I will also ask our doctor what the parameters are for what we're aiming for not only for bone marrow results but for counts before chemo.

Meanwhile I'm trying to brainstorm how to make enough of a living to pay the bills and how to make all this work. It is probably going to mean that he will need to stay an inpatient without a caregiver and I will have to live at home and work at anything I can find.

Will post more next week as we learn more.