Pete's Blog

Leaving for China and Facing a Challenge

2010-04-15T19:57:00.000-04:00

I leave for China on 4/19 and won't return to U.S. soil until 5/4. It was a trip we both intended to make for my son's wedding, but we knew as time went on Pete wouldn't be able to make it and I would be traveling alone. I am ready. It will be an adventure. I will make this journey, but hardly alone.

I received news of my own today. I have been diagnosed with endrometral cancer. It is in the early stages and I am not worried at all. I will make the trip, enjoy myself, be there to meet my son's bride and her family and be proud to see them marry.

I will return home to friends that will see to it that I am completely taken care of. I have my own personal guardian angel that has done a fine job so far and shown me that life is worth living and fighting for and that it's O.K. to let someone else take care of you.

It's very different to be on this side after providing so much care. It's very different to have people that care about you the way you cared about someone else. It's very different to be the one getting needles stuck in you for blood work and having tests done at the hospital. It somehow doesn't seem real. But later next month after surgery I'm sure it will be very real.

I am very lucky. It could have been much worse. I am lucky for having a doctor that truly has always looked out for my best interest and never left anything to chance. I am lucky to have someone who has been by my side through all of this and who I can tell will continue to be by my sides along with other friends. I am lucky for such good friends and someone special that cares so much for me. I am very lucky and I can feel it.

February 3, 2010 - Pete's Birthday Month

2010-02-03T16:36:00.000-05:00

In November I sent a long letter full of specific facts where I believe UAMS failed us to UAMS. I didn't expect to get a response and it is my intent to make this information known through as many avenues as possible. My main complaint? That the doctor there had no regard for Peter's quality of life despite many attempts to explain this to him and his requests to get to go home. There is simply no excuse for that.

I received a response that this is being investigated. There were a few facts in the letter they sent that were wrong. They seemed to think that we missed an appointment or didn't follow through. I am preparing a response to their letter setting things straight. There were no appointments so I can only guess that based on his last labs there should have been an appointment, but that no one ever followed up after the last labs as promised. It also mentioned that we showed up at the clinic and left. I clearly stated in detail how we spent hours there and kept requesting a doctor and told none were available.

I am slowly coming around and not blaming myself as much for his death or doubting what I did. It doesn't do any good anyhow. It won't bring him back. I have actually found more reasons to be mad at him for things that he didn't do and left that I deal with and cuss him out loud when I have to do such things.

I have completed my video of photos that is set to music. I put a lot of time and effort into it to make it 'perfect' in my mind. I have finally been able to get this copied onto a DVD and to play in a DVD player. I am making additional DVD copies to send out with thank you notes. It's a gradual process. They will be mailed out over the next couple of weeks.

I managed to make it through the holidays with the help of a good friend. I tend to stop briefly when the calendar hits the 19th each month and count how many months it was since he died on 9/19. I find it hard to believe as much time has passed.

I think, except for perhaps the anniversary of his death, that February will be the worst month for me to make it through. February was always an important month in our household. Valentine's Day on the 14th was always something Pete made a big deal about even though he showed me how much he loved me all year and told me so several times a day each and every day. He always tried to go all out for Valentine's Day.

His birthday was two days before Valentine's Day and my son's birthday was two days after Valentine's Day. They were mirror images. Pete never wanted any fuss on his birthday. His thing was strawberry cake. His mother used to make him strawberry shortbread and it was always hard to get strawberries in season in February in Philadelphia. I always made a strawberry cake of some sort for him. His last birthday he turned 60 and was amazed that he'd lived with the cancer that long. His goal was to make it to retirement age, but there will be no more birthday's and this year will be a painful reminder of that. His last birthday, we sat in the doctor's office. Near his birthday, we visited my family in Oklahoma and my grandmother made him his last cake.

February 2010 will pass without any birthday for Pete. He will not see 61. I will have no gifts to buy for his birthday to surprise him and there will be no gifts on Valentine's Day, which of course you can't escape hearing and seeing everywhere this time of year.

The only upside to the month is that at the end of the month our Jeep club is having a trail ride and I have signed up to go. As we planned, some of Pete's ashes will not only be in the pendant around my neck but in a small container in the glove box. That's what he always talked about. He wanted me to keep going and just take him along and know he was there with me.

The first of this winter rides, back in 2007, the three of us went and there was a huge ice storm the night before. We had a once in a lifetime experience that will never be forgotten. It was perhaps the most outrageous trip we ever made. It was also our last real trail ride with the club I believe. We didn't make this trip in 2008 or 2009.

There will never be another Pete or anyone to replace him. There will be other people to have fun and adventures with though.

The holidays...

2009-12-14T17:26:00.000-05:00

The holiday season has not been bad dealing without Pete. I have taken steps to surround myself with people that care and that has been the biggest help.

I have been working on a slide show of photos of Pete's life in photos I have taken over the years. I have the slide part complete and am 95% satisfied with the music I used. I want to tweak the music a little more and then let a couple trusted people critique it. Then I will burn DVD's of it and send with thank you notes to those people that sent cards, participated in the memorial, and made donations on his behalf.

I had hoped to have this done by Thanksgiving, but the first few go rounds with it left me in tears and it took a while for me to be able to look at it with fond memories instead of breaking down. Now it's just a matter of my own perfection for the project.

I think it will be a fitting memorial and is about 15 minutes long.

I have been selling things on eBay and am not getting back into CAD to survive financially as best I can.

I sent a very long, detailed letter to the UAMS hospital administration outlining complaints and received zero response. I will step up my intensity with the letter to other people and organizations. I need to do this for Pete and for my own closure.

I think closure is one thing that has been a problem for me because after all the discussions over the years, Pete was always so sure that he would let me know when it was time and that we would be together in the end. That wasn't the case and he didn't even get to tell me "good-bye" or appear to know I was there. That will always haunt me I think.

October 13, 2009 - Life After Pete

2009-10-13T22:45:00.003-04:00

It's been more than a month since we came home and almost a month since Pete's death and I have been unable to function well at all let alone post here.

I am overwhelmed with guilt. People tell me I shouldn't feel guilty, but I can't help but wonder if I gave up too early or should've pushed harder for him. I had watched him get worse over the past year yet he was so sure that everything would be fine the way it always was and we'd be home again to take care of things.

I was the one that was exhausted and out of patience in the end. I called it quits because I couldn't take anymore and I couldn't get any help. I need answers from the so-called doctor that wouldn't ever allow him to go home for even a couple of weeks when he would ask and would never discuss options or quality of life. Pete wanted answers and I need answers not just for him but for my own peace of mind.

Our local oncologist said that he didn't think we should've gone back out there in April. He had tried calling the doctor in Little Rock twice and never did get to talk to him on our behalf. He called what UAMS put him through these last several months "torture". He said some doctors are afraid of failing and will put their patients through anything to keep trying instead of having honest discussions. He calls those kind of doctors bad doctors and I can't agree more.

If the doctor had told us what options we had, what quality of life, what the pros and cons of these treatments were like our original oncologist always did perhaps we could have come home sooner. We might not have had the financial ruin that we now have. Pete would have known he was coming home and we could have had some time around a campfire, a jeep ride, or just time to take care of some odds and ends that I really needed more input on before he was gone.

I also know Pete well enough to know that he knew his body better than any other and knew it well. When he asked for a couple of weeks between chemo to go home and recharge his batteries mentally before coming back for more I knew how important that was to his success. The doctor didn't know that and didn't know what a death sentence that was in denying him. He could've at least discussed it with him and said that it wasn't advisable and here are the risks, etc.

I'm trying to put together a letter, but can't get much down without breaking down. Patients can't be treated this way! Patients are people!

My son flew in from China and my dad came down and we went too fast in trying to clear out some items. It was too hard on me to get rid of things so fast. I still don't have enough money to pay for the final expenses or to catch up our past due bills.

Our local friends have been great help in so many ways. Not only have they given their time, but each of them have called to check on me every day or two.

I was shocked when someone that had been former friends of Pete's emailed me about not being invited to the memorial service. I never denied anyone! I would never do that and Pete would be horrified to think that anyone was fighting like this.

The memorial service was different than planned but nice. It was to have been on the Saturday following his death, but it poured all day so wasn't possible. His two best friends from college drove down from Pennsylvania and stayed. Several of his friends that he worked with, went shooting with, or went jeeping with attended. Only one person had to cancel due to the change in date.

Because of having the service on Sunday and the out-of-town guests that had to be back at work on Monday everything was rather abbreviated and during the day rather than afternoon into the night.

There were two mechanical breakdowns among the off-road crowd and we laughed that it would've have been smooth sailing for Pete. We had a campfire and sat and looked at pictures and read some letters from his private box. We told stories of when each person met Pete or a funny story. We gathered up what we thought were the last of the stuffed Barneys that were a common target for shooting get togethers and took turns shooting Barney and then put the last of them in the fire. I was surprised to find a hidden garbage bag at home with more! We'll have to take those out on the one year anniversary.

I sprinkled Pete's ashes into and around the campfire. I sent home some with my son to China to be used in a special custom there. After all, we'd already had our passports to go to China in April for my son's wedding. Pete still got to go.

I can't sleep at night. It seems that when it starts to get dark I start crying and can't stop. I feel responsible for his death. When we were cleaning out some rented garage space it almost felt like I had hurried his death in order to finally get rid of some things that he never would.

I also feel badly because he always told me that he would tell me when it was time. He didn't tell me. The only thing he told me at all was one night when he was having so many nightmares about dying that he had one that made him not afraid to die. He never gave me any indication that he knew I was even with him. Our trip home he seemed to be very lucent and he said he wasn't mad at me for taking him home because he believed UAMS had given up on him and he never would understand why the doctor would not talk to him or give him straight answers.

He talked to our local oncologist here and wanted answers. The oncologist told him that he shouldn't expect someone like the doctor there to ever give an answer or explanation. He said that his body had been through too much and it was time to let it rest. Pete's comment was that it sucked! That was about the last conversation. He never talked to me at home or before he died and I think that's what is driving me insane.

He also kept saying every month and every year that he had to hang on no matter what to get rid of his ex-wife. We could never make the attorney understand how terminal this disease was and no one at all knows how many times I was sure he was going to die and then he'd come back again. Now, after all the money and all the hanging on this woman is going to receive 75% of his disability check. That too makes me mad and makes me question my decision. Should I have helped him to hang on longer?

My work in Little Rock is over. Had I known that there would be management policy changes that would not allow me to work from home temporarily maybe I wouldn't have left Little Rock.

So now I don't have Pete to talk to or care for. I don't have a job. I have no money. I have no answers on whether I should have stayed or if coming home was the right thing to do.

I cry most of the night until I finally fall asleep early in the morning and then sleep until mid-day. Then I try to sort through things, put things up for sale, clean house, and then it's dark again and the cycle starts all over again.

I've opened and sorted mail and know I have to write letters to all the medical bills and creditors and inform them of his death. I just can't bring myself to do it.

I am grateful for all the friends we have that call or stop by every couple of days. I didn't expect that and feel very fortunate.

Today was one of the last nice days we'll have for a while and was as perfect as you could ask for. I just went out in the woods where Pete and I would go and spent the day. I cried some and just pondered some. The woods was our special place.

Peter Powell passed away 9/19/2009

2009-09-19T17:38:00.004-04:00

Peter is finally at rest. He died today at 12:20 PM. Arrangements were already made with the Simpson Funeral Home here in Roanoke for cremation.

Peter will be cremated in his favorite ratty cut-off jeans, a t-shirt from our first earlycj5.com trail ride (this group brought him more happiness than any other and this ride was memorable for both of us), his favorite ratty dock shoes, and his old military-style jacket from his Moravian College Grotto and Outing club days. Something special is tucked in the pocket of the jacket per his request as a remembrance of the 60's.

We had planned all of this and I encourage you to plan and discuss important issues like this with your loved ones. Keep it light and not all solemn.

We chose not to have a funeral because most of his friends live outside of the area and because his body looks so terrible. He hated the way he was starting to look and commented that he looked like an 80-year old man. He had lost so much weight that I thought he resembled a concentration camp victim. At the local hospital here everyone thought he was my father.

Next weekend a couple of close friends, my son flying in from China, and I will go to a special place where we enjoyed sitting around a campfire and shooting. We'll have a campfire, share some Pete memories, and probably round up the remaining stuffed Barney's that Pete was saving to shoot and use them for some target practice and then burn them in the fire with a few other items.

We'll spread some of Pete's ashes there at the campfire and mix them with the campfire ashes. Some of his ashes will go in a little film canister and go in the glove box of whatever Jeep I happen to be driving or go with me on all trail rides. I have also ordered from the funeral home a pendant that will have some of his ashes inserted into it and I can wear discretely around my neck and keep under my clothing, though it is a lovely piece of jewelry and no one would ever know what it really was.

I eventually will drop the "jollyjeepers" logins and emails because without Pete, there is no jollyjeepers any longer. He was the "jolly" in jollyjeepers!

We have lost all of our insurance due to finances so I will be selling what I can to pay for the final expenses.

After some thought and discussion with some medical personnel, I believe that Pete's body has been shutting down for the past couple of weeks. I don't believe anyone at UAMS saw this and I blame them entirely for his death and lack of quality of life. I will be putting together facts and information over the next month when my head is clear and sending them so that they can make sure that this doesn't happen to anyone else.

I am also going to request an interview with a particular local news anchor to ask them to educate the community on people that do have to be away from home due to long illnesses and some of the complications from our experience.

Obituary to appear in Roanoke Times

Peter A. Powell died September 19 in Roanoke at the age of 60 after a 7 year battle with Multiple Myeloma. His beloved Beth was at his side and survives him as does her son, John, who lives and works in China.

Peter's main career was in transportation working for mail contracting firms for the past 20 years and being self-employed as Powell Air Cargo previously.

He graduated from Father Judge High School in Philadelphia, attended Moravian College, and graduated from Pierce College with a Business Management Degree.

Peter was a member of a number of classic vehicle clubs and enjoyed this hobby with Beth. Together they were known as "jollyjeepers". They enjoyed camping, hiking, and especially off-road trail riding with vintage jeeps. Peter enjoyed all outdoor activities throughout his life. He also enjoyed collectible firearms and target practicing. Peter was an avid music lover as well.

Peter was a lifetime member of the Kaiser Frazer Owner's Club, member of the Corvair Society of America, Roanoke Valley Mopar Club, Willys-Overland Jeepster Club, EarlyCJ5 Club, and several local Jeep clubs. He also participated in Studebaker Drivers Club events with Beth and together they were former members of the Military Vehicle Collectors Club. He was active in go-kart racing and drag racing as well as SCCA racing and participated on a regular basis through the 1960's-1970's. Peter loved sharing his hobby with fellow enthusiasts and was always a regular participant in the Star City Motor Madness.

Peter volunteered for the WVTF public radio Reading Service regularly and was an active participant and fundraiser for the Leukemia and Lymphoma Society Night The Light Walk and American Cancer Society Relay for Life events annually.

A special private campfire memorial service will be held later. Memorials may be made to the Multiple Myeloma Research Foundation or The Leukemia & Lymphoma Society in his name.

The Leukemia & Lymphoma Society (888) 773-9958
Donor Services
P.O. Box 4072
Pittsfield, MA

Multiple Myeloma Research Foundation (203) 652-0234
383 Main Avenue, 5th floor
Norwalk, CT 06851

Thursday, 9/17/09

2009-09-17T16:26:00.003-04:00

Pete was brought home Tuesday by ambulance. I notified everyone I could of our tight surroundings to let them know that they would have to carry him from inside the front door to the bedroom in a sheet. No one passed any info on to them.

They parked on the street in front of our neighbor's house even though I showed them where to pull in the driveway. With construction and the very busy cut through street I thought it too dangerous to unload Pete on the street, but that's what they did.

They dropped him in our front room by his desk because they couldn't carry him. They knocked him into his desk and he screamed out in pain. I don't think they had any idea that he had the severe bone pain already or that his platelets were in the single digits and a blow or fall could cause fatal bleeding. In general they seemed rather clumsy. I was worried for Pete's safety and embarrassed that they couldn't have simply wheeled him all the way to the bedroom.

They weren't rude at all, but did make me feel embarrassed because they said they weren't prepared for "this house".

I had the nurse give him a double dose of oxycodone and ativan before the ambulance arrived so that he wouldn't be in too much pain from jarring around. Because of that, he slept through the rest of the evening until I was ready to come to bed. Then he woke up and wanted to sit on the side of the bed like he had been doing in the hospital.

He has refused any medication at all. I tried to give him some because he seems so miserable, but he pushed my hands away. When I tried to give him some water, he knocked the glass so hard that it spilled water all over him and the bed.

I looked up dehydration death on the Internet and found that this is actually often a preferred and peaceful way to die. I found some hope for the first time.

I have been pretty much staying with him in the bedroom the entire time. I nap or sleep a little when I think it's safe no matter whether it's the middle of the day or not. He doesn't know what he's doing.

I have not called hospice to come out because I had in mind that this might be fairly quick. He's too weak to even sit up by himself. He's only had a few sips of water since he's been home and output is down to a matter of drops with a diaper change from moisture about once a day.

I don't want help right now and want to be right there with him because I don't want to not be there when his time comes. There's no way of knowing if he'll let me know or not, but I can't stand the thought of him going without me so I'm just taking each hour and each day at a time. I'm also praying for God to be merciful.

Yesterday I had a visit from the City Inspector about our property. He pointed out that the grass needed to be mowed. Neither of our neighbors have their grass mowed and it's calling for rain for the next 7 days. I told him that we have someone that does it every two week's that does our one neighbor's lawn too and that I was sure they would be out this week. I could mow it myself, but I don't want to be outside doing that and leave Pete alone.

He also said that while he understood our situation and would give us some time, we need to address the issues. He said he talked to our one neighbor that seemed upset that nothing had been done.

I asked him why he put a sticker on one of our jeeps that clearly had an antique tag on it and he totally ignored the question. I think he doesn't want to admit that he doesn't know the DMV law.

I told him that once this was all over I planned to clean out, sell, and move away. I was not going to take anymore abuse here.

I sent an email to Dr. Barlogie advising him of our situation and asking for answers for Peter. I told him who and how we'd been failed there and felt no choice but to return home. I have received no response which disappoints and angers me. I thought at first there might be a day delay while he investigated the matter. No response at all is complete disrespect. Once this is all over I will retaliate.

I got the email up by myself with a new connection and got the phone fixed, but have turned it off and am only using it for outgoing calls. I don't have caller ID and the phone is ringing non-stop with recordings of bill collectors. Anyone that needs to contact me will do so through the cell phone. It was disconnected for running out of money, but is back on for now.

I'm exhausted, but I know I'm doing the right thing by being here during Pete's final time. I do wish I knew that I made the right decision in bringing him home. No communication on this issue has me feeling guilty.

Right now I just want peace and quiet and time alone with Pete. Please respect my wishes.

9/14/09 We're home

2009-09-14T21:35:00.002-04:00

Made it home. Lot has changed. Road construction right in front of our house. Neighbor running a day care on one side. Favorite neighbor on the other side moving to retirement community at the urging of her children by the end of the month.

No phone at home. No internet yet. No cable. Lots of cleaning and work to be done.

Exhausted. Road construction more than average.

Don't think it will be long now.

9/11/09

2009-09-11T19:38:00.002-04:00

We are going to leave in the morning. I was just too exhausted and had to lay down and nap for an hour or two today. The car is 75% packed. My main concern is being able to lift the folded wheelchair over our luggage in the back and get it on top.

We received some forwarded mail today and found that trouble just seems to keep getting worse and worse. I have managed to overdraw our bank account and have utilities shut off and insurances dropped because of this long distance aim at survival.

Now we've received a letter from Social Security that further aids to our grief. They did not pay Peter for September and are garnishing his checks for the next several months to repay and overpayment. He is already garnished for spousal support. This has got to be an error! Of course it's a Friday night and no way to get answers and they probably won't talk to me unless I go in with my Power of Attorney forms. Even at that I don't expect it to be easy. Nothing with Social Security ever is.

So now that this is after the fact, all the bills we paid for the month have bounced because there was no direct deposit and we were already in hot water with all our creditors due to my previous foul ups. I don't think anyone has any patience anymore with us and our "cancer treatment". I think they must think it's a story after this long of a time.

I don't even know where to turn for help anymore.

I had signed up with a service to sit with Peter before I made the decision to bring him home yesterday. I called them yesterday and apologized and canceled everything and asked them to please refund any deposits or processing fees paid to them and just tear everything up. Today a girl showed up and I had to call the office. They are not sure if they can refund her coming out and while they can refund my deposit, they cannot refund the processing fee of $50. Crap.

Two nurses also came from the hospital to draw labs. One I knew and liked because she had always been so friendly and helpful when she's taken care of Peter in the hospital. I hadn't canceled their trip because I thought it might be beneficial for one last set of labs or if he was in some desperate need of platelets it might be a good idea to get them before the trip. They were very nice and understanding. I felt better about everything that happened yesterday after talking to them.

They said that they would have someone call us with the lab results and would also talk to some people at the hospital and have someone call us and talk about this decision. I told them that I wanted to be sure that I was making the right decision. No one ever called. No lab results. Nothing.

I asked Peter today if he was looking forward to going home and he just gave me this blank stare and asked "Going home?". He doesn't understand.

I'm not sure how we're going to deal with diaper changes in the car and am hoping that he will just sleep quietly, but I'm sure he'll be uncomfortable. It will make it a longer trip with no one to talk to.

On the road in the morning. Oxygen tanks will be picked up tomorrow. Hospice service arranged for Monday. Won't have Internet service before new service is installed on Wednesday. Cox has no idea why they didn't turn service on so I'm done with them and have moved in another direction. Can't take dealing with them any longer.

Thursday, 9/10/09 Making final trip home

2009-09-10T17:51:00.002-04:00

Maybe it's a funny thing that tomorrow is 9/11. Today I had to make a very hard decision.

Peter has been mentally deteriorating all week. He's been out of energy and sleeping 24/7 for the past couple of weeks.

Last night I sent some emails for help to the clinic because I believe I'm at my wits end. I got a call from the scheduler at the clinic who told me that Dr. Barlogie is in Greece and wouldn't be there for our 3:30 appointment today. I'm not sure why we were scheduled for when he'd be gone or why they waited until today to bring that up, but it seemed that no one else would be available to see us at 3:30 and it was asked if we could reschedule.

I explained the situation and it was suggested that instead of going to 7C for our daily labs and IV's that we come there to they Myeloma Center and see a triage nurse and the doctor of the day. So we went there at 1:00 instead.

It was pouring rain. There was a parking nightmare and some mix up on the visit, but after all that was sorted out we got to see a very nice nurse shortly after our arrival.

She was very careful to really listen and get all the information. She asked Peter if he knew what year it was, who the president was (we'd all like to forget that anyhow!), and where he was. He couldn't respond to any question.

She said that our P.A. wanted to see him before he left and that the doctor of the day would see him too. She mentioned the doc and I told her that he was just getting on the elevators as we were getting off. He's not one of our better choices which is why I noticed him. She was a little mad because she told him specifically that we would be coming and one other patient and needed to be seen.

By 2:30 she was getting impatient since this doc had said he was on his way which must have been a fib. The P.A. never came to see us.

We discussed the fact that we keep asking over and over again for options and quality of life and no one wants to discuss these with us. She told us that was our doctor's job. Well, our doctor is the head of this program and even though I have asked in person and via email and other people have asked him to discuss this with us he never has. I asked if there was anyone there now that could speak to us. She checked and there wasn't. I also asked her to check his past labs and see if this new drug is in fact working. I was led to believe after his first dose that it was working great. That does not seem to be the case. His free light chains have continued to rise despite this drug.

I asked her if Dr. B's assistant was there because I knew she was a no nonsense person. She let her know we'd like to see her and was told that she would get to us.

After another hour and with the time being at 3:30 (our original appt. time) and not a sole seeing us since 1:00 other than this nice nurse sitting with us, I made a decision. I had already talked it out while talking to her.

Peter is 100 times worse off than when we came a year ago. He's too weak to stand. He can't walk. He is wearing diapers. He is not aware of when he urinates or has a bowl movement. He is using oxygen. He doesn't seem aware of anything around him. He is sleeping all the time.

Since no one will have an honest conversation with us and everyone seems too busy for us and this drug does not appear to be working, I do not see any need to further investigate these new symptoms. I do not see the need for Peter to be put through any more misery for the sake of science, medicine or any other reason. Since he cannot make any decision for himself and granted me that power I have made a decision and hope that I will not regret it.

I thank the nurse and told her to tell everyone that I was taking Peter home to Virginia and making his last days as comfortable as I could. I was in tears when I said it and I think I'm still in a state of shock.

I've got to get some Internet service back at home so I can work remotely, clean and get rid of clutter to make the house safer, contact a hospice organization to come out and help me (at the suggestion of a co-worker here), and try to sell some things and keep the wolves at bay. I don't know how I'll get Peter into the house, but I'll figure something out.

I will pack and load the car tonight and tomorrow. We already have a nurse coming in the morning to draw labs and I'm keeping that appointment. He did not have any labs drawn today or his port flushed. I'm not sure if we'll continue any of that or just let it go after tomorrow. I'm not sure I see the point.

I hope to leave Friday afternoon or possibly Saturday morning. I can't get any refund on the room since it is a monthly deal and there are no refunds.

I was going to go to work on Friday for some important meetings, but I have canceled because I don't think I would be very effective. I don't think it makes sense to pay a nurse to sit with him while I do that anyhow.

So, in the next day or two we'll leave Little Rock for the last trip home. I knew this day would come, but it doesn't make it any easier. We had such a short time together and I miss him already since he's not really here in mind.

Thank you for everything.

Monday, 9/7/09 Labor Day

2009-09-07T21:59:00.002-04:00

On 9/1 we began the new drug, Carfilzomib. Pete received that via an IV push on days 1,2, 8,9,15,16. He takes 20mg of dexamethosone orally on those days.

The first day he got chills very badly after receiving it, but they passed. A few days before that he had a reaction to a platelet transfusion also with the chills and today the same thing happened with platelets.

We will see the doctor on 9/10 just to keep an eye on the progress.

One thing that has happened and we haven't been able to tell if it's related to the drug or not is that all week his mind has been very muddled. Some days are certainly worse than others, but in general he is as confused and saying bizarre things like I might expect from someone with Alzheimers. It's very difficult to deal with.

He's just talking complete nonsense and obviously I can't leave him alone. He also had asked me to please not leave him because he was afraid that he was going to fall. I have spent 24/7 with him and can't even leave to go to work or the store. If I need to get milk, he wants me to stop on our way home and pick it up while he waits in the car.

This is starting to weigh heavily on me and I feel as if I am on the verge of insanity. I've talked to a couple of nurses at the hospital and called a couple of agencies that are available to sit with him, but I can't afford it. Some of the nurses that work on the side are $40/hr. and the techs are $20/hr. The agencies are $16+/hr. with a 4-hour minimum and a deposit.

He has refused to be hospitalized and has become more and more work. He's having terrible nightmares about death and dying that wakes him up in a terrible state gasping for air and usually wetting the bed.

I only get a brief hour of sleep here or there at night because he gets uncomfortable and sits up, or needs to use the bathroom, or has a nightmare (several a night), or is just confused about something.

I desperately need a break. I don't think the hospital is the answer because they would not be with him 24/7 and he would need help and not be able to ring for help and I am fairly certain that he would insist on me staying in the room with him so he wouldn't feel scared.

So you can probably see why I haven't posted all week. I'm too exhausted and too busy.

Sunday, 8/30/09

2009-08-30T19:30:00.002-04:00

We have been very happy going to the 7C clinic at the hospital as opposed to the MIC clinic. It is very hard to get to 7C and as things go at the hospital all the patients at this clinic might as well be redheaded step children.

Because most of what goes on for Myeloma patients is in the doctor's office in a building on one side of the campus, the MIC clinic in a building next to the doctor's office, or the new inpatient wing on 7F, the clinic on 7C is in the old hospital and has been all but abandoned.

The care is the best we've ever experienced at UAMS. The staff all work well together and give you the feeling with no exception that the patient the the main focus with also a lot of emphasis on the caregiver. This is the way we are treated at home and what we've been missing. I don't know why this attitude is not found elsewhere. It's certainly the opposite at the MIC clinic.

The other areas of the hospital have places to park near wheelchairs, or drop off points with help to get the patient out of the car and into a wheelchair. This used to be the case for the old part of the hospital too, but not since the new hospital opened. Someone needs to be informed that there are plenty of patients that need assistance and wheelchairs are needed as well as the help for patients coming to 7C.

The closest parking is the top deck of a parking garage. That deck is in very poor shape with concrete chunks missing and it hotter than perhaps heck itself. There is no drop off point or place with wheelchairs available if you are arriving.

There is a semi-circle drive on the way to the parking deck where patients used to be dropped off and picked up. Now it is only used for deliveries and employee drop off and pick up, which makes it even more of a challenge if you are trying to pull in to unload your patient. We have a terrible time trying to get into this area because there are always cars just sitting there.

Pete is not doing well at all. He's got bandages all over his left arm where his skin is so thin it just cracks open and starts leaking blood. He's weaker than ever. He's not eating or drinking. He's had diuretic for the past two days because he had to have some blood and other fluids that put him over the top and made him overloaded with fluids. He is back on oxygen and miserable. Now he's even more tired from the loss of fluids and potassium.

He's having problems with too much calcium again and it's affecting his thinking. He's had several shots and an IV to help with this and it hasn't made any difference. This could be from the Myeloma making more holes in the bone since he hasn't been treated in over a month now while we've been waiting on this drug. All the indicators of Myeloma short of a bone marrow biopsy show that it's increasing. We don't know if this drug will be too little too late.

I'm going to stay in the room with him all week to keep an eye on him.

He also had a reaction to the platelets he was getting today and got a terrible case of the chills.

Monday we will go to the clinic early and have labs drawn to see what we need. Then we need to be at the doctor's office at 3:00 to sign papers and review the facts on this new drug. At 4:00 we'll see the doctor. We will probably be there until 6-7:00 as usual.

Since Peter's bone marrow still seems dead and not producing anything at all, I want to ask the doctor about that and what impact that is going to have and what we can do.

May not post anything for a couple of days as things might be kind of hectic.

For anyone trying to email us, I have given up on Cox. I have spent more time than I can imagine possible on the phone with them so much all year. I can't deal with this any longer and really needed to have service restored so that I could send out emails in our address books with a new address and to get some important email copies. Now that is just not possible.

I had a long-time email account with Yahoo long before Cox. I have created a gmail account with Google, but so far I think any emails I send are sent to spam folders. If you are trying to contact us, I have created a new account with Yahoo. It's still jollyjeepers. It's just Yahoo.com now. I'm not spelling it out anymore than that so that it doesn't get picked up and used for wrong purposes.

We gave up our Cox phone service too at home since they couldn't get their act together on that either and had already given up cable television long ago.

We're possibly going to need to sell out because we can't keep up anymore and I can't get anymore help.

Thursday, 8/27/09

2009-08-27T21:44:00.002-04:00

This has been one of the worst days ever.

Pete is not feeling well at all. He is moving away from me and withdrawing. He is depressed when I am gone in the mornings to work. He is depressed that he has not been able to go home. He is depressed that there has been such a delay in getting treatment and doesn't know what will happen.

Right after we got to the clinic this afternoon I received a message on the cell phone. It was from our pet sitters that said they tried to email us but our email service was disconnected again by Cox on Monday and even though I have put a lot of effort into trying to work with them I don't seem to be getting anywhere.

We have had previous problems this year with our property in Roanoke and now the City is after us again. I just couldn't take anymore! I really fell apart at the clinic. We are losing control of everything and there is no way that we can make people understand our situation here.

When you tell people that you have been here for the past year and non-stop for going on five months now, they don't seem to believe you. They think "cancer" is something that you treat with chemo and/or radiation or cut out the tumor. Myeloma does not fall into that category. There is no cure and it always has to be fought.

I spent the afternoon on the phone between several departments and learned that while I have sent certified mail, letters, and emails NOT A ONE were in our file. The person that had been working with us has gone to Iraq and over all the months that I kept in touch and documented everything, there was no record of any of it. Our letter copies are at home and we have no way to get into email and see sent items either on the Internet or on our computer at home.

I left messages and made call after call and got no where. I tried calling Cox too and had to start over again from everything I had just been told and none of it seemed to be the same as it was two days ago when I was promised service reconnection.

The one piece of good news is that we received a call after this that the drug we've been waiting on has been approved and we will come sign approval on Monday and see the doctor and begin on it on Tuesday.

We were also told that we cannot take this drug at home since it is experimental and has to be dispensed here at UAMS. No sight of home anytime soon and now things are far worse there than ever.

I can't take anymore. I can't keep doing this. We're losing hold of everything and just living in a hotel is getting old with not much on t.v. and feeling trapped in this one room. God, please help us.

Friday, 8/21/09 No drug yet

2009-08-21T09:22:00.002-04:00

Our doctor's visit was canceled this week because the FDA has to approve our emergency use of the new drug. It's a day to day wait right now.

Good news is that heart test came back O.K. and that increased fluid removal has helped with breathing. Pete hasn't used oxygen in two days. If this trend continues, we'll start trying to do physical therapy to regain strength and endurance to be able to stand and walk again.

Weight is down to 174lbs. Another 10lbs. down. Very bony.

Still needs platelets every day and blood 1-2 times per week.

Saturday, 8/15/09

2009-08-15T22:24:00.005-04:00

Thursday we had a day at the clinic that was really trying my patience, but it ended on a good note. Friday we saw the doctor and learned a lot. Saturday we are starting on a new path.

Thursday
Had labs drawn and were ready to go by 4:00. I asked for the previous day's labs before we left. Back to the frustration of ME being the only one that is paying attention to these!

The better nurses, will have those printed and even reviewed before we are called back. Then they can tell us that we are low on whatever or that they have ordered platelets for us, etc. The nurse we had is one of the more popular nurses for his fun-loving style, but he doesn't keep up in my opinion.

Not only did he not even look at the previous day's labs at all, he spent over half an hour going to get them from the printer and debating with the charge nurse on whether to order blood and platelets at that hour. Had they looked at these during the hour we were in the waiting room or while he was having a good time or just ordered the blood and gotten on with it all would have been moving along. Finally it was announced that they would order blood and platelets. Pete requested to be transferred to one of their beds so that he could lay down and spend the next few hours that it would take to transfuse. That was granted.

Because of the problem he's been having, we really needed some oxygen to help him get into bed. Due to having his bone marrow biopsy the day before, he was having some hip pain and sitting for a while was painful. We saw no nurse and couldn't seem to run down anyone to help and Peter was feeling as though he could get into bed and tried. He had one of his attacks in doing so and needed oxygen.

That was at 5:00. From 6-7:30 there was a conference that Dr. Barlogie was speaking at we had planned to attend upstairs in that building. We didn't see any nurse until almost 6:00. Remember, we had the labs drawn at 4:00 and came over to the room at 4:40. This was ridiculous! And to make matters so much worse, the nurse was a $itch. She had the worst attitude I'd seen there and made things miserable.

I asked for oxygen tubing for Pete and Pete joked something along the lines that we thought we had been forgotten about. She went off on us that she didn't know we were here and was just notified and no one told her that he needed oxygen. No one told her because no one knew. I just asked for some oxygen tubing. I didn't say that he was in dire need of oxygen or anything.

Then she was looking over some notes on a clipboard. She didn't have his chart there. She said that he was getting blood and I made sure to mention that he gets pre-med of 50mg. of hydrocortisone. She blew up again. There wasn't a note anywhere. There wasn't an order anywhere. No one told her about this! Uh, I just did. You'd think I just asked for something major.

When the blood came, we were talking about how Pete had been so fluid overloaded. Since the blood didn't arrive until 6:00 and they go home at 7:00, this was a recipe for disaster. I told her that I was going upstairs to hear Dr. Barlogie speak. I also told her that because of fluid overload the blood is never run faster than 250. She went off again and looked at her watch and rolled her eyes and made a very disturbed noise. I thought to myself, well we'd been there since 2:45 and it's not MY fault that you are just getting blood started at 6:00. The fault is no one looking at labs and the delay in acting.

I went to hear Dr. Barlogie. There was quite a spread of food so at least I had something to eat. I sure wished Pete was there too.

I met up with a social worker that I highly respect and had a really good conversation about the different types of social work. Then Dr. Barlogie came in like a rock star. He very casually wandered around and announced that he decided on his way over to the building he changed his mind and decided to make this a chance for him to ask us questions instead. He wanted to know what areas that we felt could use improvement. He did hear it and some things he was aware of and some weren't. Some things he had been trying to change for years and could not seem to get the right person to be over it or get employees to work together for a better system. It was a good discussion.

I was watching the time and a signal on the cell phone from the nurse that Pete was ready. I had planned to go downstairs at 7:30 if I didn't hear. It looked like this discussion was going to go on for a while and I hated to miss any, but the phone vibrated at 7:25 and I exited and went downstairs. Pete was getting platelets and doing well. His nasty nurse left and another nice nurse we knew was there.

We were there until about 8:00 at the clinic. I then took Pete upstairs to see if Dr. Barlogie was still speaking, which he was. Pete had a bite of food and something to drink and we discretely entered the room and I wheeled him to one side of the room to listen. The topic had changed to some new therapy using donor immune systems to fight the Myeloma. Then it was over.

It was a late night for us, but I was pretty wound up from the energy from the meeting. We didn't get back to our room until about 9:00. We got involved in a movie and went to bed a little bit late.

Friday I really was too tired to get up and go to work, but I had two small things that I needed to take care of in the office and then I could come back to the room and work. I had a webcast that I could do in the room. We had planned on leaving at 2:00 to go to the clinic early. We needed to be absolutely sure that we could get labs done and still get to our 3:30 doctor's appointment.

We signed in at the clinic at 2:15 and put in big letters that we had a 3:30 doctor's appointment hoping they would draw the labs in a timely manner. It only takes 5 minutes to draw the labs. It takes an hour or more to wait for that 5 minutes.

We had been there 45 minutes when a lady that we thought to be some clinic supervisor came to us and told us that we would be called next. Great, someone must have read my note. I did notice that it took 15 minutes before anyone came and picked up the slips from the front desk, so that is probably what some of the delay is each day.

We waited another 15 minutes and when we had been there a whole hour I went to the desk and let them know that we had to be at the doctor's office at 3:30 (in another building) and that we had been there an hour. Also, when we were told that we were next, two other people were called back.

A short time later we were called to an "express" area to have the labs drawn. We were there a little while until I mentioned that we had to be at the doctor's office in 10 minutes and then the nurse assigned to us was really good about moving to us and got us out of there. We only had 5 minutes to spare to get across two bridges and up three floors to the doctor's office.

At the doctor's office, the P.A. took a lot of time with us. We talked about the breathing difficulties that were still present from the last time we saw him. He looked over all the labs and information. He told us that the bone marrow biopsy results were good in that the Myeloma really got beat down with that chemo even though we only got half way through it. The bad side of that is that the bone marrow isn't doing anything. Sometimes the bone marrow dies after so much chemo. It wasn't doing anything at all. That made Pete look very worried.

We talked about some other heart tests and oxygen. We talked about the drug that he believed the doctor would want to put Peter on next. He got everything ready for Dr. Barlogie to review.

Dr. Barlogie was not in a good mood. We heard him outside our door reprimand two nurses for laughing when there was work to be done. He looked really stressed.

He read over all the material on Peter and seemed to be concerned. We talked about why he was hospitalized two weeks ago, the fact that he was not being followed by an APN in the clinic, the breathing problems, and his health in general.

He talked to the person over this new drug and requested to have it here on an emergency basis immediately. He said we should expect it on Tuesday or Wednesday. I asked him if we would be taking anything else with that and he said only dexamethasone.

He then called the main director doctor and asked if he remembered what it was that they had discussed previously about Peter and his congestive heart failure. Pete's face just dropped. That's what his father had died of after he broke his hip and wouldn't get out of bed afterwards. We'd never heard this mentioned in context with Peter.

Then the doctor stated that he insisted that Peter become a patient of the other clinic and be followed closely by an APN. There seemed to be some discussion about this and Dr. Barlogie insisted that he is a delicate and complicated case and that it was imperative that he be followed closely. He demanded it. I was impressed.

What the doctor said about Peter's heart was a condition called Amyloidosis. It happens to Myeloma patients. Since the doctors in the hospital had told us that his heart had been damaged by the one chemo drug I asked if this was the reason and the doctor said it had nothing to do with chemo. It really was a result of the Multiple Myeloma because of too much protein in the blood. Peter got really scared. The look on his face was terrible. He asked the doctor if he was falling apart and would there be anything that could be done for him.

The doctor patted him on the head and said that it's not uncommon and that when you treat the Myeloma this is treated automatically. When the proteins go down, this will go away.

What really impressed me is that when I looked this up on the Internet, the symptoms were such a perfect match along with the results of the BNP blood level that was extremely high. No wonder they thought this was a perfect match.

Typical signs of the condition include symptoms of congestive heart failure: weakness, fatigue, and breathlessness. Swelling of the legs, caused by fluid retention, occurs in a significant number of patients. Other symptoms include nausea, bloating, and poor appetite, probably because of the retention of fluid around the liver, stomach, and intestines.

The plan right now is this.
Saturday and Sunday go to this clinic in the old hospital and be closely followed and cared for.
Receive albumen to help the fluids stay in the veins and then receive a diuretic immediately afterwards to get any excess fluid out of the system.
Have labs drawn and get blood or platelets as needed. Electrolytes need to be followed and adjusted carefully with this change in fluid level.
Monday labs
Tuesday MUGA test for his heart and then labs
Wednesday return to the doctor for review and to get started on new drug
Depending on the outcome of the MUGA test, a heart biopsy may be the next step.

After our visit with the doctor, Pete was really scared, upset, mad, depressed all at once. We decided to go for a drive in the country for a couple of hours. He always likes it when we get out like that. I had things I needed to do, but this was important after all this news at once.

We received home oxygen to use as needed today.

We had such an extremely pleasant experience today at the clinic. It was quiet, fast, the people were so very nice, we weren't there a long time, it was just perfect and relaxing.

Saturday, 8/8/09--Why do we bother?!

2009-08-08T21:32:00.005-04:00

This place is going to drive me over the edge. I think I'm going to send a note to the two top docs here and tell them they need to put me on the payroll because I'm tired of doing everyone's job here and tired of the insanity of this place.

Thursday I left work on schedule and got Pete to his echo and EKG appointments to check his heart. We had a wait on the first test so we were late getting to the clinic for labs to be drawn.

Each day we get the previous day's lab printouts. If we are staying for IV's of any kind, we get them that day, but we have not been getting any IV's other than platelets most every day.

Friday we had a bone marrow biopsy and PET Scan scheduled. We've learned from experience that the bone marrow biopsy requires a minimum platelet count of 20. Pete is never at 20 unless he has platelets given. On Thursday I commented this to our nurse. I told her that because it was well after 5:00 and they closed at 6:00 that we knew we couldn't get platelets that day, but it was imperative for them to call me and get us in to get them before the bone marrow procedure. She was very nice and said she would make a note and even drew a tube of blood for cross-matching to expedite the process. I also commented that his red count was at 8.0 and his cut-off for getting a unit of blood was 8 so he would probably need blood on Friday as well.

Friday I had made arrangements to work out of the office and hold my weekly conference call from the hotel room. I thought this would save travel time and that I would have a better shot at making sure Pete would be on time for everything. It takes a long time to get him ready.

No one called from the clinic and I was working fast and furiously. I got him up just before 11:00 and let him have some breakfast and his morning pills since he had to fast for 6 hours before the PET Scan. Things were going well, except I knew I wouldn't have enough time to finish all the work I had to do.

I called the clinic number and had to go through the phone menu several times before I could get a live body. The recording pointed out that no lab results would be given over the phone. I reached Charge Nurse M. This was the same nurse that was less than happy with me the weekend before for bringing in Pete so late on a Saturday and in such bad shape that he needed to be admitted to the hospital. Duh! We had both been complaining all week as he was getting worse and worse! But I digress.

Nurse M was again very negative. Perhaps she has burnout. She immediately started blaming some other department stating that it was their job to review labs and inform patients. Well, I don't know. I only know what the nurse told me she was doing the night before and no one had called and I needed to be sure that Peter didn't need platelets before we arrived at the bone marrow area and were turned away (which has happened before). She looked it up and sure enough his platelets were 17 and needed to be 20. Damn. She said she would order them so they could be ready when we got there and we could just get them and go to the test. I told her I would get him ready and get there.

It took forever to get there. Peter is so tired and this problem that he has losing blood pressure and running out of breath when he stands up causes him to have to take time outs with everything he does. Due to some bathroom problems and other things, it was necessary for me to work him over from the wheelchair onto the shower bench. It worked out, but was over an hour process and the clock was ticking.

I finally got him ready and we left, but it was almost 1:00 and I knew we were going to be in trouble.

It's taking longer and longer to get into the clinic once you arrive. The parking deck is always packed and finding a spot is nearly impossible. You can generally forget handicapped spots. I have to drive around and around and sometimes have to stop at the wheelchair area and get Peter into a wheelchair and leave him while I go continue trying to find a spot. There is no one there to help either. I generally spend about 20 minutes getting a spot, getting him in a chair, and getting from the garage into the clinic.

When we signed in I wrote in big letters that we were to have platelets ready and had a 1:30 bone marrow test. We sat there until 2:15 before we were even called back.

I called the bone marrow area as soon as we were in the waiting room to let them know where we were. They said that if we were not there at 2:00 they would automatically cancel the appointment. I explained the situation again and there was no room for change. I asked if they could come do it in one of the beds where we were and they said they could not. I asked if we could just come on ahead since he was only 3 points away from their minimum (even though I was sure of their answer). They said no. They were not very nice at all.

There was no speed involved and the nurse was trying to help several people at once so we just sat longer. I explained that we missed our appointment because of all this waiting. It was just a very frustrating day.

My boss was leaving at the end of the day on vacation and was leaving a lot of things for me to handle and wanted to wrap up some things so my phone kept going off with emails and calls which added to all of the chaos.

I'm not sure what was said, but a girl came out of an office and talked to the nurse and said that we were fine on our bone marrow appointment. I informed her that we were told that it would be canceled if we were not there by 2:00 and it was now almost 2:30. She insisted that she called them and all was well. I didn't feel overly confident about this. She didn't give me her name to give them or tell me to whom she talked to.

When we received the copy of the previous day's labs, it showed his red count was down to 7.7. I asked about this and received a flippant response about guessing that we would need to see about that the next day. I would think someone should be worried, but perhaps they figured there was no way to fit it in so they wouldn't worry about it. I expected to get a call about this later, but it never came.

We rushed off to the bone marrow area about 3:00 and found everyone leaving. We announced who we were and why we were late and were told just as rudely as before that our appointment had been canceled. I tried to explain this person that made special arrangements and we waited while everyone was asked, but we just kept being told that our appointment was canceled. The last appointment of the day is 1:30 there and they all leave at 3:00.

I was furious, but not entirely surprised. I went back to the clinic (this is in another building) and told our nurse that they denied us. She informed us that she knew that because the girl told her after we left that our appointment had been canceled! Why didn't she tell us and save me racing Peter in a wheelchair to another building and another floor and go through all that. I could have strangled each person involved.

Since our PET Scan wasn't until 5:00, I decided to go to the doctor's office in yet another building. I had called trying to reach a scheduler when we were first in the waiting room and told that the bone marrow had been cancelled, but no one returned my call. I figured I'd better get this handled in person if I wanted it done. I would also have to move our doctor's appointment from Monday until after the bone marrow. It wouldn't do any good to see the doctor if he didn't have any test results.

We set everything up to start at 9:00 Wednesday morning and have labs, get platelets, have the bone marrow, and then have the cardiac MRI. Then we'll see the doctor on Friday. I have to teach a class on Tuesday so I'll be out of pocket. This will work.

We were then informed that we had to go back to the clinic where the labs were drawn before we went to the PET Scan because something was wrong with the labs that were drawn and new labs needed to be drawn. Rush, rush, rush, draw labs, and then on to PET Scan. At least we made it there in time.

Pete was hungry after the test and wanted his Friday fish so I stopped at and got him a kid's fish meal. He was happy and ate almost all the fish. Who says you can't take all the Catholic out of someone?

Saturday we had to be at the MRI at 1:00 and Pete wanted donuts. We got ready and stopped at a local chain and got a few donuts and something to drink. They were very good. We drove to the parking garage and ate them before heading to the MRI.

We were on time for the MRI. They were running about 30-40 minutes behind because of an inpatient that had to come downstairs for a test. Pete did fine except that he just couldn't stand it anymore when they got to his head and bowed out on that last scan. I don't think it will be a problem.

We were smart enough to know from our stay in the hospital that with some oxygen, Pete didn't have the problems standing and moving to a table to lay down. For both the PET Scan and MRI we let them know this and his dropping blood pressure problems as soon as we checked in and they were both able to accommodate this. Pete said he didn't feel the least bit out of breath when he got up out of the wheel chair and went to lay down with help.

Because of the test running late, we didn't get over to the lab until 3:50 for our 3:00 appointment. We waited about 45 minutes and then waited another 15 minutes once we got vitals taken for the nurse to finish with someone else. She drew our labs and we discussed the previous two days of no one paying attention to his labs except me. She printed me a copy from the previous day and his red count was even lower as suspected and he needed platelets.

I told her that since it was almost 5:30 and they closed at 6:00 I didn't see how he could receive any of these, but if they could move our Sunday appointment to noon or 1:00 we could be there in time to get both and have our labs done. She said this would be fine.

We were both very tired and went back to the hotel. It was 5:45 when we got into the room.

A little after 6:00 the cell phone rang and it was Nurse M from the clinic. She was mad because she didn't know we left and she had ordered blood for us and now it was there and going to be wasted. Well how would I know that? She was really on my last nerve and it was a good thing that it was over the phone instead of in person because I really think they would have been calling security. I have had enough nonsense this week! I'm sick of this place and sick of dealing with all of this. I'm doing the best I can and Peter is not getting any better despite everything and we're both having to put up with one ridiculous problem after another from UAMS and their damn miscommunication.

Nurse M stated again that she had ordered blood. I told her that I had talked to the nurse today about blood and platelets and that we had agreed to get both tomorrow and come in by 1:00. I told her that no one had called about labs in days and I had been the one that was proactive and watching every lab and bringing things to the nurses attention. She again was very negative and told me that during the week the clinic (I guess the doctor's office clinic?) was to check the labs each day and notify patients and that on weekends the charge nurse does that but that she doesn't have time to do this for everyone, etc., etc. It was unprofessional and I really had enough of her blame and negative comments.

I told her that I know for a fact that I talked with her yesterday when I called myself to make sure the platelets were O.K. for the bone marrow and that she is the one that ordered them and that we'd missed the bone marrow anyhow.

She of course blamed me again for coming so late. She said she thought we were coming as soon as she hung up and we didn't get there until almost time for the bone marrow. That was about the last straw! I was not shy in letting her know that she has not walked a mile in my footsteps. Unless she has cared for a patient personally 24 hours a day in the poor condition that Peter is in that she has no idea what I go through to get him ready. I told her that I began the minute we hung up. With bathroom problems, cleaning up after that, changing clothes, having to take time outs to catch his breath, dressing and washing him, it took every bit of the time from when I hung up the phone to get him ready and in the wheelchair and down to the car to get there. I told her about the parking problems and problems getting a wheelchair at the hospital and a parking spot and then wheeling him to the clinic. That's the second time she accused me of not getting him there in a timely manner. I've really had enough of this B#%^&*.

We went around the whole scenario twice about not being notified of low lab numbers and who's to blame for what. She had to mention again that she ordered blood. How about we focus on the patient here and not play the blame game?

Peter was exhausted and went to bed shortly after this phone call. I am so stressed out between all of this nonsense and money problems that I don't know if I will be able to sleep tonight. I'm flat broke right now. I don't even have money for more groceries past what we have at the moment or pay any of our bills at home. Things are worse than they've ever been and I have no one to turn to for help. I can't deal with this anymore.

Wednesday, 8/5/09

2009-08-05T21:17:00.006-04:00

As of last Thursday, the doctors all agreed that Pete could be discharged. They wanted to check his labs on Friday and as long as nothing indicated alarm they were fine with him continuing his improvement as outpatient. He would have daily labs at the clinic and not receive any IV fluids there other than just blood or platelets as needed. They also agreed to write a prescription for a wheelchair and the process for obtaining one was started. A wheelchair was delivered to the room that Medicare will cover to rent and we will be billed at about $12/mo.

He needed blood and platelets as well as an IV antibiotic Friday afternoon. These got started late and were going to go into the early evening and made Pete feel tired so he asked if he could just stay overnight and leave in the morning. It was agreed.

A doctor that had been making rounds with our hospital doctor came to see us late in the afternoon. I'm not sure if she was a resident or fellow. She was obviously very pregnant and made a good impression speaking for the first time with us. She stood outside the room with me and told me that since Pete wanted to stay the night and leave in the morning she would write orders for discharge based on patient and family readiness. She said everything would be in order so that whatever doctor happened to be on call would have things done. That sounded great since I feared a weekend call doctor wouldn't want to take the responsibility.

She also said that she expected the blood pressure drops to right themselves in a couple of weeks as his body returned more to normal and with him drinking plenty. She said that while the bottom half of his heart did show damage from the chemo, it may also right itself and could certainly be controlled with medication if needed. She made me feel comfortable and I found myself wishing that she had said more during her visits with the attending physician.

We went to bed early on Friday and Saturday we were lucky enough to sleep in a couple of hours. I explained to our nurse that we were ready to go as soon as the doctor on call came around to discharge us. I packed what little belongings we had in the room and had them ready by the door. Pete was anxious to leave.

We had to wait until the afternoon before a doctor that we'd never seen before entered our room. She introduced herself as a Myeloma doctor and we announced that we were ready to go. She didn't hang around to find out anything about us or Pete's condition. I told her that everything should be in order per Dr. M and the other doctor. She asked the nurse if she knew anything about this and she hadn't been our nurse on any previous day so she didn't. She left the room to call Dr. M. and we never saw her again.

Hours past and we didn't see the nurse or doctor and Pete was really getting impatient. He suggested we just get in the wheelchair and leave. He'd had enough of games and wanted the heck out of there. I was tempted to go along with it and knew that I had to be the voice of reason for at least once. I tried to think ahead of how this action would come back to bite us.

I figured that if we just went into the clinic the next day, they wouldn't have any doctor's orders to even do simple blood tests. That would probably really screw things up. We agreed to give them until 3:00. We got involved in a Clint Eastwood movie, Pale Rider that went past 3:00. We did call for the nurse at 3:00 and she said that when the doctor called our other doctor that she had claimed that she hadn't given us permission at all to leave. That really ticked Pete off since we both heard her say that on Thursday and the other doctor said that on Friday.

He informed the nurse that he was officially refusing to stay and insisted on discharge. It took until almost 5:30, but we received a very short discharge sheet. The nurse told us she was waiting on an infuser of an antibiotic. We told her that we don't use infusers (Medicare doesn't pay for them) and we have not had that antibiotic. She said it was standard protocol on that floor for all patients leaving "in case of fever" while outpatient. I told her that we'd never had fever that was a problem and that Peter really hadn't had a fever since he'd been in the hospital last fall. I also told her that's what Tylenol was for. She wanted to insist on this and we insisted on refusing it.

We went to the Studio Plus where some of the hospital staff had been so helpful to get them to honor a special rate they advertised by were trying not to give me back in the middle of July when I really needed something in that price range and with some permanence.

I really couldn't afford it now because it was 8/1 and I needed to use my paycheck to pay the mortgage. But I was stuck between a rock and a hard spot. We no longer qualified for any hospitality houses because I was working and had an income. I had just paid over $500 on vet bills for our cat that passed away while I was home. I had just paid for a month of pet sitting and caught up on the lawn care people. I had missed a mortgage payment and a car payment and now I was having to pay for a month at this nice place to live. I had to sign a contract for 60 days. I also had spent almost the month's worth of money for this place on the past two weeks at the other motels while I was trying to get in here. So I am out twice as much money now and no way to make payments at home. I have gotten us into a real pickle and don't know quite what to do right now.

We have a nice room with a full kitchen, living area, super-equipped handicapped bathroom, and bedroom. The grab bars and shower seat in the bathroom make this all worthwhile. I wish more places had this type of equipment and wish the hospitality houses did as well.

Sunday we went to the clinic for labs. We waited over two hours to be seen. We didn't dare let Pete stand on the scale or stand for a standing blood pressure. He would get winded or light-headed if he did and we couldn't risk that.

The nurse had an infuser with that same drug they tried to give us when we were discharged from the hospital. We refused it. She wanted to know why. We told her that we really didn't want to go into it, but the patient had the right to refuse it and Peter made it known that he did. She wanted to push the issue and got him upset (I don't think she noticed). We told her that we'd never had it and until we saw a doctor and had someone explain to us that we needed it or why, we were refusing it. She kept on. She tried to tell us it was in case we got a fever. We again explained that Peter has not had problems with fevers even when he has high CRP and that was what Tylenol was for anyhow. It was really getting annoying. She finally drew the labs.

Then the charge nurse came over. This was the same nurse that seemed to accuse me the previous weekend of not getting him to the clinic in time to be handled correctly or not doing something more to get him into the hospital. She wanted to tell us that our doctor's nurse had ordered this. The name she gave is not one of Dr. Barlogie's nurses that I ever heard of and I found it odd that any of his nurses would have been involved on a Saturday or Sunday. As far as I know they only work M-F. Well, Peter was really getting mad and annoyed by now. We went through all of this again.

Sunday Pete decided that we should have pizza. We went to two places that are local establishments and both were closed on Sunday. We finally drove to Little Ceasar's and got a cheap pizza to go. The phone rang and it was the clinic stating that we needed to return for platelets. I said O.K., but when I hung up Pete announced that he was not going to the clinic and was not being hooked up to anymore IV's for anything. He said he was tired of it and the constant clinic and hospital visits and he needed a break. I tried to persuade him, but had no luck.

Monday morning I called the doctor's office to request a visit for whatever day had a 4:00 appointment. I didn't hear anything and attempted to email the one scheduler that I had an email address for. I still didn't hear anything until lunch time or after when she told me that we had an appointment for 4:00 that day. She wanted to know how soon I could get Pete to the clinic for labs. I told her not before 3:00 and I knew he needed platelets, but I'd try to get him there slightly earlier so they could get us through.

I left at 2:45 and got Pete and rushed to the clinic. They had the platelets in and the labs done in no time. We arrived at the doctor's office at 4:35 and I feared it would be too late. They assured us at the clinic that we would be fine and these things happen all the time.

We signed in and waited half an hour. Then the scheduler came out and told us that she had moved our appointment to the next day! I was ready to strangle her. She said she emailed me and handed me a printed email. It was sent 5 minutes after I left work to rush him around.

We spent an hour going around about this and having a supervisor get involved. The scheduler was the only one working that day and kept apologizing to the point that it sounded like a broken record. They asked Dr. Barlogie if he could see us and he couldn't because he had a conference call and couldn't see us late. We were both really perturbed.

In the end, the P.A. agreed to see us. It turned out fine because all that needed to happen were for the staging tests to be ordered and that's all the doctor would have done. The scheduler worked around our schedule and my work schedule to spread the tests out and leave Peter the week to relax except for clinic appointments each day for labs. It took some doing, but we got it done. The P.A. also took Peter's request to remain off meds unless there was a problem.

Tuesday was a pain in the butt day because the doctor's office kept calling me on our personal cell phone at work several times that day. Our scheduler had told us that she would be on vacation the next day but would make the arrangements for the last test (one to check Pete's heart) when she came back on Wednesday. Another scheduler called and wanted to schedule it for Wednesday morning. Not possible because I work and I can't really talk now because I'm at work. She kept on. I told her not to worry about it because the other girl would take care of it on Wednesday. She wanted to make a mountain out of a mole hill and I had to say "enough".

She tried to rearrange every appointment we had. Then her supervisor called back a short time later and wanted to start all over again. She ignored the fact that I was at work and couldn't talk and wouldn't take "no" for an answer! This was really out of hand. She didn't see why we couldn't fit this in between the bone marrow biopsy and the PET Scan. She couldn't understand that not only was this cutting things too tight, but that it was WAY too stressful on the patient. THERE IS A PATIENT TO CONSIDER HERE! Oh how easy they forget that and what might be best for the patient. I finally refused the extra test because that was the only way I could get rid of her. I was missing calls at work because I couldn't answer my work phone that was ringing with customers because of this nonsense.

After that call, I had a call from the PET Scan people that wanted to know if Pete could come earlier than 5:00 on Friday. I explained that he couldn't because he had a bone marrow biopsy and labs. They asked if he could come in the morning. I told them that he couldn't because I worked in the mornings. I suspect that no one wanted to work Friday night if they could get out of it.

Thursday we'll start having tests and have an echo and EKG as well as normal labs. Friday we'll have the bone marrow biopsy, labs, and PET Scan. Saturday we'll have the MRI. Monday after that we'll see the doctor at 4:00 and we will make sure we won't be late!

We still need to schedule a heart MRI in which a cardiac doctor must be present. We will have to schedule that after we see the doctor.

We are hoping that the doctor will have some news on the new drugs he mentioned and perhaps Pete can start them. I doubt that he will be able to handle any more chemo. I think too much damage has already been done from it.

Will report more probably when we hear from the doctor.

Thursday, 7/30/09

2009-07-30T19:38:00.003-04:00

We are learning that things are very different on this floor than the usual Myeloma floor, even though we can see that floor from here.

It's nothing major, but enough of little things that are driving us insane and making Pete feel uncomfortable and ready to escape this room.

We have had a tech the past two nights with a real attitude problem. She was argumentative and loud with no consideration for anyone trying to sleep. She insisted at 11:30 and 4:30 that Peter get up and weigh. Not only is that not something that you would want to wake up someone for, but you risk having the patient get lightheaded from laying down and then standing up suddenly. It's insane and asinine.

Two nights ago she came in and it had only been 10 minutes since the nurse took Peter's vitals at the end of a blood transfusion. I told her this since we had just been trying to go to sleep and she wanted to argue about needing to do it and having her orders. He's just had his vitals taken three times during the transfusion and a fourth time was ridiculous.

She came bombarding into the room again, letting the door fly open and scared us, at 4;30 that morning and asked "if I would allow her to take vitals". That was uncalled for and I mentioned this to the nurse the next day.

We have also had a time because there was an error on a lab report, which happens, and the doctor reacted by ordering blood glucose sticks every few hours which we refused. It was a pain for two days though because someone new kept coming to do it and we had to refuse and they had to tell us how we needed it and we refused. It was tiring. We were lucky enough to have a good night nurse who took the time to review all our labs and found that they were all fine except this one and all before and after were fine. We finally got to see the doctor today to have that canceled.

On the Myeloma floor they have "food ambassadors" that are very good at handling all your food needs. Here, they don't even do anything with the menus that you mark for what you want and don't come to pick up the trays when you are done and are people with attitudes that appear to only be here to collect a paycheck. The techs have said the problem is widespread across this floor and not just with us. They are having to pick up the trays themselves after every meal hours later and deal with complaints about not getting what is ordered and seeing people throw away the menus.

Peter felt pretty good yesterday in the morning and then got tired and slept. Today he felt pretty decent all morning. He ate a bigger breakfast than normal. He had a shower and sat in the chair for a little while. He worked with physical therapy. He told everyone that would listen that he wanted out of here.

The renal team said that things are moving in the right direction and that if tomorrow continues the same then they didn't see any reason he couldn't go back to outpatient status. We requested a wheel chair, though I don't know how I could fit it in my packed car without unloading it first.

The only problem today was that the tech tried to overwhelm him by doing the bed, weight, and vitals all at once and in a hurry. His legs gave way while he was waiting for the scale to read and the poor girl couldn't deal with an emergency. She clearly didn't know what to do. She couldn't move to hit the call button and froze. I was holding Pete and couldn't reach the call button but was trying to tell her she needed to call for backup. She went running out of the room and got his nurse in a panic and she paged the doctor as an emergency. The nurse put him on oxygen and Peter said he felt fine he was just too weak to stand after having the shower, getting to and from the shower, and sitting in the chair for half an hour while I paged for the bed change three times. Guess I should've just done it myself. Heaven knows I've done it before.

Pete is down to 183, which he was the last time they weighed him two days ago. He's lost all his water weight and his blood pressure is so low that he isn't on any blood pressure medication. It will take a couple of weeks probably until the kidneys are back to where they were.

The doctors also confirmed that the heart test showed that the heart has been damaged by chemo and the bottom two chambers are not pumping enough. The heart may repair itself or may always be weak or may need to be controlled with medication.

We'll see what happens tomorrow. I need to go to work as well as get us a place to stay. I requested a hospitality house as we're broke and I need my paychecks to pay for bills at home, but I don't think we qualify anymore. We did get some help to get one of the extended stay places to honor a deal they had on the Internet that they wouldn't honor when I attempted to get a room there when we first moved out of the hospital the last time.

Tomorrow is Friday. We'll see what happens.

Tuesday, 7/28/09

2009-07-28T20:34:00.004-04:00

Yesterday I stayed at the hospital all day to try to be there for any decisions and visits. We saw the doctor that we'd had over most of the last two months in the hospital and she requested a renal consult.

She ordered extra platelets assuming that he would need to have a new set of lines placed to do dialysis immediately.

The renal fellow came and spent a lot of time interviewing me about Pete's condition. He was very thorough. He said he didn't see any need for immediate dialysis because even though he had too much fluid, nothing else was out of balance. He said he would consult with his attending physician and get back to us.

Yesterday they wanted to do an ultrasound of the kidneys. Pete had refused before, but they assured him that it wasn't painful and would only take about 5 min. He had these in the past in the room, but they said he needed to be taken downstairs in his bed. He also had to fast for 6 hours before the test.

They took him down about 2-3:00 and he was gone forever. I guessed that there was a wait on transport to bring him back up. The nurse kept checking for him as she had several new orders and needed to get him here and get started on them. He didn't arrive back at the room until 6:00. He was highly agitated and stressed because he asked 4 times about coming back to the room since the test was only 5 minutes and each time they stated that they had called transport. He hadn't had anything to eat or drink and was thirsty and needed to go to the bathroom. He was just stuck in the hallway for hours.

They started him on a small amount of fluids and a diuretic. They also ordered labs every few hours so that if certain changes happened or he was urinating too much they could adjust and not wait too long.

Pete was so stressed out that he asked for an Ativan and went off to sleep. He asked me to please stay with him and not leave him. He asks for so little that even though I'd had a tough day trying to work remotely and coordinate everything I didn't want to deny him and go back to the hotel.

I figured out how to pull the fold-out chair in the room to make a bed and attempted to sleep there for the night. We were constantly interrupted. I would no sooner get sound asleep and something would happen. There were vitals, extra labs, someone emptying trash, several times of urination and just constant disruptions.

We had interruptions at 5:00 with trash collection which wasn't long after labs and then something at 6:00 followed by a rude awakening by a tech that came into the room at 7:00 sharp and flipped the overhead light on. I jumped out of my skin and out of bed and stopped myself short of breaking her arm! I asked her what in God's name did she think she was doing? I think I scared her.

She was all bubbly and was there to take vitals as well as announced that she would be in every hour to write down what Pete had to drink and check for urine. I told her that turning a light on for a patient that was sound asleep as dangerous and too shocking. I also told her that she would not be coming in every hour and informed her that I was quite capable of calling when there was urine to be emptied. She had her orders and was not going to go away easily. I was so tired I just wanted to be left alone.

We finally worked things out with the nurse and throughout the day I was sure to let someone know when there was urine to be emptied. The tech didn't like the way that I handled the intake of fluids, but I wasn't backing down any.

We also had a rude awakening of someone coming in to say that they were there to take Pete downstairs for an echo test of his heart. I told him that we didn't know anything about that and refused.

We saw the kidney fellow again who examined him and said he still didn't see any need for dialysis and that he and the rest of the team would be by later.

We saw the regular doctor here in the hospital that is assigned to us. She said she wanted to make sure that the heart was pumping enough because of the kidney function and the need for oxygen it might be damaged by the chemo and the echo would check that. I told her what happened yesterday and she asked if we would agree if the test was done in the room. I told her I thought so.

The renal team came by and the attending physician was most pleasant and confident. He said that he felt very sure that the kidney function was a result of one of the chemo drugs that is known to damage the kidneys. He explained it all as well as the fact that he thought the fluids were not staying in the veins, which I'd also heard once before. There was also a blood test that he wanted to do just to be sure of one other thing. He didn't see the need for dialysis and was going to stop the diuretic because of dehydration and explained the fine balance of too much fluid and not enough.

I told him that I didn't think this was magically going to be fixed overnight and he agreed. He said even though this team would only be on for the rest of this month (this week), he was sure that they would have some clear direction before then.

So we'll just watch things and adjust as needed. Even though his kidney function isn't good, it's not getting worse and his electrolytes are staying even. These are good signs.

I would expect that he would need to remain in the hospital for another week or two until all this stabilizes. We really don't expect that he'll be able to get any more chemo and believe he has already had too much. It's not having any effect on the Myeloma anymore and is only doing harm now. Time to switch to some other plan. I've asked the doctor to please ask Dr. Barlogie on Thursday rounds about the drugs that he was trying to get us on. I am sure we can't do anything until he's in better shape, but we also can't wait too long or we'll never be able to get it under control.

I've moved out of the hotel room and will stay at the hospital for the rest of the week regardless of how uncomfortable it is.

Sunday Update

2009-07-26T16:59:00.002-04:00

At 3:00 PM I finally went to the nurse and demanded to see someone and asked why no doc on the weekend, renal or otherwise, had been in to see us. She said that the docs were there early this morning and left. She assumed (I think) that we had been seen. She immediately paged the doc and then came and told us that Dr. K. would be over shortly.

He did come over and give Peter a good examination. He asked a lot of questions and looked over the doctor's orders and chemo orders that I had on hand. He said that the chemo may have affected his liver function and since non of his electrolytes were up that even with the BUN level so high he was not going to do a renal consult and was not overly concerned. He said with overweight people sometimes the BUN is not accurate from what I gathered.

He's going to continue on the diuretic and doesn't believe he is fluid overloaded or in danger. We'll see what tomorrow looks like.

I feel better because this is one of the doctors that I actually trust.

I will go back to the room about supper time and do some laundry and pack up some of our things. I plan to move out of the hotel this week when our paid time is up and see if the social worker can get me into a hospitality house for now. I'm broke.

Sunday, 7/26/09

2009-07-26T13:02:00.004-04:00

I realized that there has been a lot of missing information over the past week or so. Things have been extremely hectic and now Pete is back in the hospital. Let me try to recap.

We started going to the Infusion Center Clinic on Thursday, 7/16. We put off the chemo until Friday to give the solution that was to be put in his lines to clear them up 24 hours to work before the chemo was to begin. The charge nurse was really great about getting everything arranged, making sure details and paperwork was in order between the doctor's office and their office, and setting appointment times in the afternoon that allowed me to go into work each morning. Thank you Nurse L.

The nurse we had on that date didn't put the solution in his line because he didn't think there was a problem or need. He said they seemed to be flowing fine and it must have just been the nurse the day before.

Friday of that week we started a 14-day bag and two pumps of chemo. It was late starting because the APN kept ordering other IV's and such to be given and the lines couldn't be used until they were done. We got started with chemo about 5:30 that night.

The weekend was pretty routine with trips to the clinic, chemo bag changes, IV antibiotics, platelets. Peter was doing O.K. and we both took advantage of the weekend to get caught up on some uninterrupted sleep.

This past week went totally haywire.

Monday started off with a bang with a blown transformer and fused ground wires at work causing a loss of electricity. I went back to the room about 11:30 when they were going to shut the server down and move us to generator power until the electric company could get it fixed. When I got back to the room Pete had a fever of 101.6. It's a good thing I happened to come back early. I gave him some Tylenol and he didn't have any fever at the clinic, but his CRP was going up. Our really quick-thinking APN wasn't on duty and the one we had was more of a slow and cautious type. I couldn't make her understand that these things generally get out of control with Pete and that we needed some action.

I had reserved a room for a week's rate on Tuesday of the previous week when he was discharged so Monday night was to be our last night. I'd had several shots that I thought were going to work out on an apartment, but they all fell through. I found a Value Place motel chain that had less expensive weekly rates than we had paid and had a kitchenette and not just a microwave and small fridge. I thought that would give us the opportunity to at least cook more meals and save money eating out as well as to save money on the overall week's stay. Boy was I wrong!

I took off work on Tuesday so that I could pack up what we had in the room and load the car and get us settled at the other motel across town. We also had our clinic appointments and wanted to get there early that day. It was pouring rain all day.

The Value Place only had one room left and it was down a long haul. It was too far for Pete to make it with his walker and he was very short of breath. I kept trying to get him to go back to the car and we were stuck in the middle of the distance for the longest time. He insisted on making it and then collapsed on the bed. I was feeling terrible now since at the Rodeway Inn he only had to walk from the car right in the door. This place was terribly sparse and they didn't have any handicapped access rooms available so there were no grab bars or raised toilet.

I let Pete rest and tried to figure out what to do. Their office was only open 9-6 so I couldn't go and ask for a refund. Our old motel had rented out all the handicapped rooms.

Pete was very uncomfortable and there wasn't a chair he could sit in and he couldn't lay down and breathe comfortably. I finally got him back to the car and we just drove around so he could sleep. I drove all around Little Rock and outside of town. He slept comfortably while I drove, but I was getting very tired.

At 7:00 I stopped at the old motel and they said they would have a room after 9:00 that morning. I wanted to request my money back at the new motel and they didn't open until 9:00. I drove to a secluded area near the new motel and we parked and slept quietly in the car. I felt terribly guilty for not taking any better care of Pete than this.

At 9:00 I went to the office to ask for a refund and the office person had received my voice mail message. He said someone moved out of a room that was two doors from the fire escape that he could let me have. I really wanted to be back at the Rodeway Inn where I felt more comfortable, but I had the feeling that if I refused he would not give me my money back so I accepted.

We sat in the parking lot for a another hour and a half while they cleaned the room. It was a shorter distance, but was still too much of an effort for Pete. He made it, but I knew that I'd made a mistake.

I did some work remotely while he slept and then I collapsed in the bed too. We got up and went to the clinic early again and tried again to let the APN know that he was not feeling well and not able to sleep laying down very much due to a feeling of being bloated. She again did not make any changes even though his CRP level was going up in leaps and bounds. At the end of the day she and the charge nurse stood outside the room and asked each other who was going to ask me a question. They seemed afraid of me. They asked me if I could bring Pete in at 9:00 in the morning and leave him with them for the day so he could get 2 unit of blood, platelets, fluids, antibiotics and other things that needed time. I told them that I would.

During this whole week Pete's lines kept giving the nurses more and more problems. They would take fluids and chemo, but they would not flush or draw to be able to draw labs. They sent him for an X-ray on Wednesday because the APN wouldn't write an order for the clot buster agent that was supposed to have been given to him the week before without knowing if the lines had moved inside him. We then went into a huge battle between one specialist and another that disagreed on whether the line should be replaced. Finally at 5:00 the solution was ordered and left in for an hour. It helped, but really needed more time.

We'd had two days in a row of coming to the clinic early and then Thursday Pete spent the entire day at the clinic being cared for while I went to work. They called me a couple of times and updated me. They had given him diuretic to reduce the fluid he was complaining of and he'd gotten rid of fluids all day. They also gave him something to help keep the excess fluid in his veins and not go out into the tissue. He put out about 800cc.

Thursday night he was in complete misery. He couldn't lay down. He was short of breath. He's been on oxygen some at the clinic, but refused to bring any with him. He couldn't eat or drink because he felt so full. He couldn't even take his evening pills. He sat on the edge of the bed a good portion of the night. Of course I didn't get any sleep either.

Friday I had to be at work. They had scheduled an ultrasound for 7:00 and then for me to bring him to the clinic to stay again for the day. He told be about 5-6:00 that he was not going to do any of this. He said he'd had enough of torture over the past 3 days and was more miserable than ever. I tried to talk to him and tell him that the clinic was the best place to help him. I told him I would force another APN or doctor to see him or call and see if Dr. Barlogie was available. He just refused. He said he needed a break. I called at 7:30 and canceled, though of course I got a lot of resistance.

The charge nurse on Friday was less than nice. She said that he would need to be there no later than 1:00 if I was going to bring him at all. I told her why he was so dissatisfied and miserable and that I'd tried to suggest another APN during the week without being demanding and he'd had enough. I also emailed Dr. Barlogie.

Peter slept all day. I had a meeting at work and some things that I really couldn't miss so I went to work and came back at 1:30 in hopes of convincing him to go to the clinic once he'd had some rest. No luck.

Also during this time, since the lines needed to be used for IV's at the clinic and they had problems, they kept shutting off the chemo pump for hours on end. On Thursday when he was there all day the one bag that was set to go over 7 days ran out. It was expected to run late a day, but must have been run faster to overcompensate for the constant stopping. We have no idea the impact any of this has on the treatment. Thursday night they didn't start a new bag of the "red stuff", but only sent him home with his pump and the other "clear" bag that was set to be changed on Saturday afternoon at the clinic.

Saturday morning at 8:30 the bag ran out and the pump alarm went off. I pulled the batteries out of the pump to shut it off, disconnected the line, and clamped the line off.

Friday night we were up all night with diarrhea. Again, no sleep. Saturday we slept after the pump alarm situation until noon and then I started trying to get Pete to the clinic. Between being slow moving, having bathroom problems, and being so exhausted and out of breath we still didn't get there until 3:00.

The charge nurse that I talked to on Friday was working and was still less than friendly and seemed to be blaming me for all of this, which I wasn't going to stand for at all.

When we arrived on Saturday Pete was completely winded and asked for oxygen. I asked as soon as we walked in the door and they just told me to take him to the clinic and made no motions to get someone up there with some oxygen quickly.

One really good thing all week was that with the exception of one day, we had the same nurse almost every day that is someone we really respect and the other day we had one that we like a lot. We felt we were in good hands and the nurse we had so much took care of him on Saturday as well.

I told this nurse on Saturday when we got there that Pete really needed to be in the hospital even though he really wanted to be out of the hospital. I asked for his help. The charge nurse was still telling me that I was there too late, should've been there first thing in the morning, they couldn't help me, etc.

By a stroke of luck, the director of the hospital went by and said hello and I told him that we were in bad shape. He said he was going to stop in as soon as he saw another patient, but he never did. The nurse was hopeful that with him involved they could get Pete admitted.

They drew labs and waited. They had several other patients that were being admitted and were pretty busy with admittance. They tried calling different doctors to admit him, but each one wanted to pass the buck to another. The charge nurse was pulling her hair out at the childishness of it all. Peter was just sitting in a wheelchair with oxygen sleeping.

The charge nurse called in the director of the clinic who came in and talked to me and tried her best to play the game between the doctors. No one wanted to have responsibility. She told me the only way to get him admitted was to go to the Emergency Room. I told her that I didn't think he'd go for that and that we had a big co-pay to go to the emergency room. She said that was the only way and they were about to close anyhow.

Peter finally agreed to be admitted and had some antibiotics and platelets. They told me to drive around to the emergency room and that they would have him brought around there. They told me that because of so many people being admitted that there wasn't room on the Myeloma floor, but that they had a bed on the other level of the kidney transplant floor where he would be until a room opened up on the Myeloma floor.

That turned into yet another fiasco that I really didn't have the patience for. No one had called ahead and explained to the ER what they needed to do. What I explained to them was no help and they didn't know how to handle it. The clinic was closed and there was no one to ask. I was ready to take him back to the room and just go to the clinic first thing in the morning. I knew he was in dangerous straights as his kidney function had gone from a BUN of 55 to 98 and from last year's experience with dialysis anything about 90 is dangerous. He needed attention from a renal doctor. His blood pressure was still through the roof and no different from being on medication and his CRP had decreased hugely without being on any antibiotics for 48 hours.

I'm not even going into the details in the emergency room, but we were not seen by any doctor and only had blood pressure taken and told to wait. About 8:30 someone came to take us up to 7E. It took until 11:30 to get checked in. Pete sat in the wheelchair on oxygen and used up 95% of the oxygen tank and had his feet swollen from 3:00 until 8:30. The ER was most upset at the clinic for sending him to them for admittance. They seemed to indicate to me that it was irresponsible of them. I know they didn't have any choice, but the ER certainly didn't make it easy for us.

I emailed Dr. Barlogie of the situation. We were seen by a resident late that night who I informed of everything and stated that we would need a renal consult. I brought to her attention the current labs and what was most important at the moment.

It is now Sunday afternoon and we have seen almost no one in the room. It's a pleasant change in some ways and a chance to rest. There is no where for me to sleep here so I stayed until 11:30 and slept a few hours at the motel and then came back here at 7:00 this morning.

Peter is on oxygen and oxycodone which has him knocked out for the moment and sleeping comfortably. His labs show that his kidneys are not working and his BUN is now 103. I am very fearful of what is not happening. They gave him Lasix last night and today and he's urinated very minimal amounts so his kidneys aren't even putting out. He's starting to twitch as well.

He needs to be on dialysis and should've been on it already, but he will have to have a line put in to handle dialysis, will have to have platelets to support that, and I know they won't do anything on the weekends. I am afraid by the time someone takes notice here it will be too late. I can't seem to get anyone's attention.

This is not a Myeloma floor, but with it being a kidney transplant floor I thought they might at least have more knowledge and pay more attention to kidney function and have renal doctors available all the time. I don't even know if the resident actually did request a renal consult.

I am going to try to stay here as much as possible tonight and tomorrow to see this through.

They stopped the chemo in the clinic yesterday and from what the APN told me on Thursday, his tumor markers were going up anyhow. It will be up to Dr. Barlogie to decide whether it's worth going back on the chemo at some point or to go ahead and get him on the two drugs he's requested approval on, or do something else or nothing. Each month that goes by I think that we're getting closer to the end. Peter never thinks so. He's so optimistic that he just says "he's fine" or "I'll be fine." I wish I could believe that.

Wednesday, 7/15/09

2009-07-15T21:49:00.002-04:00

Yesterday, with the help of a UAMS staff member, Pete was finally discharged from the hospital. The down side is that he had a switch from the great doctor that has taken care of him during his hospital stay to a doctor that we only have had limited experience with and been less than impressed with each time.

Much to our dismay, we didn't see his nurse from 1:30 when I arrived until we left at 5:30 or so. His dressing had been overdue for changing and we had to have that done today.

There was a list of medications along with a stack of lab copies on the table when I arrived. I made several attempts at contacting the doctor to ask what these medications were. I had passed her in the hall, but didn't know she was our doctor for the day. Still, I thought she would come in to discuss discharge instructions or see that I was there. She didn't. We didn't get to see her until very late in the afternoon and typical for her style she gave us the impression that she didn't want to discuss any details with us. That's what we didn't like about her before. In the past when we asked questions, she just told us we'd have to wait until we were outpatients and ask Dr. Barlogie personally.

When I asked about the medication list, she told me she had already told Pete about it and tried to pass it off at that. She also didn't have prescriptions for any of these mystery medications. Again, she tried to pass it off as Pete's fault. She claimed that he told her he had prescriptions. Fact was, he didn't know what they were or what we had or didn't have. He depends on me for that and doesn't remember her discussing any of it.

We never did get any real answers about the medications and she suggested we talk to Dr. B. about them when we see him tomorrow. So, we asked about the results of the bone marrow biopsy that our better doctor had ordered the previous week. The answer we got was that it was much worse. And that's just how she said it. Pete spoke up and said even after the super chemo that he just went through? She said yes, it got worse after the chemo and was trying to guess at a number. She guessed 80% or so. We kept asking if she was sure because we've never had this happen before. She left and came back and stated that it was 95%! She just blurted it out very matter of fact like the same way she told us "oh, no, it got worse". I was ready to string her up right there! No tact at all. Then after a pause and perhaps by seeing the shocked looks on our faces she dropped a "Sorry" and told us that we'd have to talk to Dr. B. about it and left.

We just sat there with our hearts in our stomachs and could hardly speak.

We went to our usual inexpensive hotel and they offered us a better deal on a week than our hospital rate per night so we paid for a week at the hotel. Pete wanted some Italian food and we found a place in the phone book that we thought we'd try to I called in an order and went and brought some great Italian food back to our room. We put leftovers in the refrigerator that we can warm up in the microwave.

Today I worked most of the day. I left at 2:00 to take Pete to the clinic for labs. For some reason we were scheduled at a different place and on the other side of the hospital from the doctor's appointment at 4:00. We were there well past our appointment in part from waiting and then in trying to do blood cultures and labs and discovering that one of his pic lines was not working. Since I haven't been at the hospital in recent days, I don't know if they've been flushing it daily or not. They tried everything and couldn't get it to work. They also changed the dressing since it hadn't been done in the hospital.

We went all the way across the hospital campus to our doctor's appointment since we thought it might save time from getting the car and driving to the other parking garage. Pete road in a wheelchair and I pushed.

We still had our usual 2+ hour wait to see the doctor, but our visit seemed slightly better than usual. It was as if he was getting to know us and we could talk a little bit. It gave us hope that someday we might be able to have an actual conversation with him.

He told us that it was bad that the chemo didn't help the Myeloma and Pete asked him some questions. The doctor thought and read and was clearly trying to figure out options and pick one.

We are going to start on a 14-day chemo bag with a pump that Pete will carry starting tomorrow. He also needs platelets as they are 18 and the minimum they want is 20. Then they are going to work on getting him approved for two new drugs on the market that are promising. The 14-day chemo hopefully will be administered very slowly and beat away any activity until the new drugs can be approved.

The nurse that came in after the doctor left wanted to try some stuff that could be put in Pete's line to free it up perhaps rather than replacing it.

He called the clinic where we'll be getting the chemo and told them that he would be faxing them orders on what to do tomorrow. He told them about the clogged line and they refused to do it. From what I understood, it had something to do with the fact that the clog was discovered on 7C clinic and needed to be resolved by that one. How ridiculous!

He called the clinic on the other side of the hospital where we had just been and asked them if they could put this in his line tonight so it could "soak" all night. They said they could and he rushed us out to get over there since it was almost 7:00 and they closed at 7:00.

He said he had talked to the doctor about the drug list, but had a new list and didn't give us a copy of it. He said there wasn't anything that he could do tonight since the pharmacy would be closed. He said he would take care of it tomorrow.

We rushed over to the other side of the hospital and it was 7:00. My cell phone rang and it was the clinic asking if we were coming. Yes, but we can't beam there! We left as soon as he nurse called them and told us to go.

We got over there and the doors were locked and we played heck trying to get into the clinic. When we got there, they told us that they couldn't get the drug to put in the line because the pharmacy was closed, but they had an antibiotic to give him. We were not notified of any antibiotic and refused it based on that. They had a real fit and said they already checked with the doctor. Turns out they called the stupid doctor that had been so worthless that had released us from the hospital! I explained that our nurse that just sent us over there had told us we were just getting this stuff put in the line and not to worry about platelets as they could be gotten tomorrow at the clinic.

We kept refusing and starting to walk out and they were getting really insistent. I was getting short tempered. I told them that he didn't receive any drugs via IV or oral from since before 1:30 yesterday. He didn't have any growth factor shot for two days now and his white count jumped from just over 1 to almost 2.35. His red count even went up slightly. Everything else was pretty good. My argument was that if this was so heck fired important then someone would have insisted that he had it last night.

We always have received discharge papers when we leave the hospital. This time I asked and was told that there weren't any. The nurse in the doctor's office today said that and the medication list were really not right.

Also there was mention about this bad doctor that there have been other problems so at least I know it's not just me or us.

I must go into work the next two days as much as possible. I'm also trying to find us an apartment that I can afford. I'm going to call the clinic in the morning and see if we can come in late in the afternoon and also try to find out if they can do everything that needs to be done. If not, I'm going to have to get someone else involved because I am NOT going to get involved in a pissing match between two departments. The patient is supposed to come first. It's just too bad that so many people disregard that for playing politics.

Sunday, 7/5/09

2009-07-05T21:39:00.002-04:00

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

2009-06-22T20:58:00.003-04:00

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.

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.

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.

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.

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.

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.

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.

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.

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.
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.
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.
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.
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.
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.
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

2009-06-17T21:04:00.003-04:00

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

2009-06-12T20:40:00.002-04:00

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.