Thursday, April 15, 2010

Leaving for China and Facing a Challenge

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. 

Wednesday, February 03, 2010

February 3, 2010 - Pete's Birthday Month

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. 

Monday, December 14, 2009

The holidays...

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. 

Tuesday, October 13, 2009

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.

Saturday, September 19, 2009

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 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, September 17, 2009

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.

Monday, September 14, 2009

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.