October 13, 2009 - Life After Pete

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

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

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

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

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

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

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.