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  #76  
Old Thu Jul 24, 2008, 08:03 AM
mannythedog mannythedog is offline
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Pop update, Late 07/24/2008

Hello all;

Thank you for checking up. I have not been regular in the past month due to changes in Pop's condition. So here we go.

Pop was officially off the Neuprogin last week. He did not get that shot at all. He also did not get the Procrit, due to the Hemoglobin being at 10.2. He did receive platelets and a chemo {Ara-C : Cytarabine}. The weekend was rough, we knew that he was having a hemoglobin issue. Tuesday he got checked, and his hemoglobin was 8.2 and his platelets were 6. Wednesday morning, mom had to help him get ready to go to the hospital, I was in Asheville at V.A. or I would have. His eyes were extremely blood shot and the vessels were large. He also was concerned about a strange feeling in his nose. He did get to the hospital to receive his platelets and 2 units of blood. He went under his own power, and refused a wheel chair. I think he may have taken one, but mom said he saw Pat, a women he See's in the room, and she was walking using the hand rail to the Same Day Unit. So, Pop said " If Little Pat can do it, I can do it!" Mom stated he promptly got sick as soon as he sat down. He is the tough one. I don't think the Leukemia will kill him, I believe it will be his pride.

The bad news, and we all knew it was coming, after his treatments, his Hemoglobin only went to 8.4 and his platelets to 33. Gonna be another rough weekend. I feel he is on the verge of twice weeklies. He said he would not do that, but I believe the Dr. said the same thing.

His spirits are good, he is just tired and grumpy. So I grump back. He stated a while back, "If I get like my dad, Just shoot me." Last week I asked him where he hid the gun. He thought that was funny, after he got over being insulted.

We, in a way, will become our fathers. It can't be helped. We all are the fruit of their loins, and it can't be helped. I have been accused more times than not by my wife that I sounded just like Bob. Thats o.k. I can live with that.

Scott,
Son of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #77  
Old Tue Aug 5, 2008, 01:43 PM
mannythedog mannythedog is offline
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Pop Up-Date 8/5/2008

Hello from Murphy, NC.

Pop received his blood test today. The nurse called him just as they were walking through the door after leaving the hospital. They live 5 miles away. His Platelets are 5 and Hemoglobin 7.5; that would explain the reoccurring nose bleeds and the length of time to stop them. He will be on twice weeklies soon, if not this week. Last week {Wednesday} his Platelet count was 63 after the transfusion. He must be dropping below or at 20 by Friday. This confirms that his body is attacking the platelets. Tomorrow he gets 2 units of blood and one Platelet again. He had asked if 2 Platelets would help, and they told him 1 or 2, his body would attack them just the same. He will need to make it through tonight without blowing his nose and having a bleed; however, keeping Pop from blowing his nose is like stopping the sun from rising. He has a frequent driper.

Saturday was a big "land maintenance day." We had rain on Angie's and my off days, and was not able to keep up with it. Our hours through the week, get us home just before dark. That made Pop feel bad, and around 8:00 Saturday I was getting the equipment ready. Pop yelled down to me that he wanted to mow awhile. I mowed till about noon, and started weed eating. I parked the mower at the bottom of the house for Pop, and about 1:30 he came down and mowed for about 40 minutes. I kept an eye on him and weedeated where I could see him. He realized his limit, and stopped. He was so happy to get on his tractor, but he realized he paid for it, for, Saturday night he sweat so bad, the chemo was coming out of his pores and burning him. Sunday he and mom drove to the house for cake and ice cream, and he was falling asleep in the chair. I sent him home to sleep.

No one can say what will happen next. My observation of him, he is not thinking correctly, especially when his count is low, and I will be sure that mom drives tomorrow. She didn't actually say it, but her actions say she no longer feels confident in his driving. I was really not looking forward to this part. She said we will talk w/ him later. He really enjoys, and has enjoyed driving all his life. I thought he would be on hospice before this happened.

I will keep all posted and I have dropped back to every other week, unless something changes. For recording purposes I will continue posting for those that are interested.

Scott

Son of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #78  
Old Thu Aug 7, 2008, 07:36 AM
mannythedog mannythedog is offline
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Update-08/07/2008

Any one out there with the same condition?

I know it has not been 2 weeks yet, but there were some developments. Yesterday pop went for his plates and blood. After the transfusion, his plates only went to 33 and his hemoglobin went to 8.2. Not the kick he was looking for. The second development is the Dr.'s report. They have concluded that Pop has MDS and AML at the same time, and his "cocktail" of Procrit, Neuprogin and ARA-C has kept him managed. {that was until he started rejecting the weekly neuprogin after over 9 months of use}

Like I said before, I always felt he was some sort of experiment. I hope the post will help those with Dr.'s that have head scratchers. Pop's Dr. kept looking, and noted inconsistencies for just being AML, or MDS. Too many connections.

Feed back?
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #79  
Old Tue Aug 19, 2008, 07:53 AM
mannythedog mannythedog is offline
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Pop Up-Date 8/19/2008

Hello from NC.

Pop made an early trip to the hospital yesterday. He was having problems with his concentration over the weekend, and yesterday he had trouble standing. Mom took him to get his blood tested and he was low on Plates and Hemoglobin. He goes in today for his 2 bags of blood and 1 of platelets. It seems that the Procrit is not doing its job either. Can't expect it after almost being on it for a year now. {Dr. only gave him 6 months} He has had more time than expected, and the Dr. was experimenting with him. Pop looks at it like he has helped someone else in the future go further by management.

I noticed over the weekend that his speech is becoming more slurred, and his time line is becoming confused. He also has a "kid like quality" at times. So very not my dad. His emotions are becoming harder to manage when he gets closer to needing transfusions. I can now tell when he is going to need them just by looking at him.

I have been watching my father fade for about 6 months now. It is hard. I would hope no one else will have to endure what he has, but I know that is not life. I was so hoping he could have gone while working, or sleeping, or in the arms of my mother.

Scott

Son Of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #80  
Old Tue Aug 19, 2008, 10:45 PM
Zoe's Life Zoe's Life is offline
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Scott,

I am sorry this is so hard. I know your parents are so grateful for you and your family. What a precious gift you are to them.

Zoe
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Diagnosed MDS-RA 5q- at age 47 (November 2006). Aranesp 2/07, good response.
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  #81  
Old Wed Aug 20, 2008, 08:01 AM
mannythedog mannythedog is offline
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Pop UpDate 08/20/2008 Procrit stopped

I know I made an update the other day, but I wanted to put out the transfusion info from yesterday. Pop received his bag of Platelets and 2 units of blood yesterday. His test after the transfusions put his hemoglobin at 8.1 and platelets at 50. He has been eating the plates in less than a weeks time. Anyway, the reason I am writing is this. When he was finished, he went to "Katie's World" the clinic in Murphy Hospital where the cancer patients go, and was setting up a time for the Thursday Chemo and Procrit. Katie told him the the Procrit was "black boxed"??? This means that he will no longer receive it. Katie stated that there have been issues with organ damage,"something we knew with our own research", so many clinics are pulling it; however, the Procrit held his Hemoglobin at near or above the transfusion level after the chemo. With out it, he will continue to drop.

After work I mowed his lower field, and then we had a chance to have a good talk last night, and this was something that we expected the Dr. or Medicare to pull him off of. Next stop, we expect the Dr. or Medicare will stop the blood and platelets. He has already had small bleeds, and red spots on his skin when his numbers get really low and now without the Procrit, he will definitely be starting twice weeklies.

Pop will be 77 on Monday. Never thought he would see it. Saturday, we're having a small party for him. Week ends are already tough for him, now this one will be tougher.

I really appreciate the support, comments and feed back. I am wondering if anyone else has had their Procrit removed recently?

Thank you for letting me ramble once again.

Scott
Son of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #82  
Old Wed Aug 20, 2008, 09:07 PM
Neil Cuadra Neil Cuadra is offline
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Scott,

Perhaps it's a silly question, but does mowing give you a chance to relax and a little time to think, maybe even some peace of mind?

I know it's physical labor, but I wonder if it's actually a pleasure to do a simple task that you know you can finish and that involves no worrying or mystery. Does it give you the "down time" that a caregiver needs?
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  #83  
Old Thu Aug 21, 2008, 09:17 AM
mannythedog mannythedog is offline
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Mowing, wish I had a bush hog

Hello Neil,
Call it mowing, I wish I had a bush hog. We have has so much rain this summer, that I have not had the chance to mow pop’s horse pastures as often as I could, so it was pretty tall… waist tall. {I’m 6’5”} Pop’s lil’ Steiner tractor was really humping. Pastures make him sound like a land baron, but between the upper 2.5 acres, and the lower 1.5 acres it is really just big enough for 4 horses. Two of which he had up until last summer.

Now, in answer to your question in a way yes. You see, pop and I have had a working relationship all my life. If I wasn’t at his service station in grade school pumping gas, I was at his garage in middle school and high school working on cars. If we weren’t fixing up his sail boat, we were doing a project that required two people. After school I went to the Navy, after that I joined reserves and worked with pop for 3 years, than moved away for about 11. Ten years ago my wife and I moved near them and the working relationship started again. Building his barn, helping care for his and mom’s horses, cutting trees and splitting them for fire wood {heating in winter here} doing side jobs trenching and laying pipe for people we know for gardens and water from their well’s etc. See, when I work, work that we’ve done together, especially when I am on his land working, I am closer to him. The hour and a half I spent on that lower pasture helped me decompress emotionally and allowed me to align my thoughts. Alone time is weep time, think time. If it is a Pop job, IE: his chores I have absorbed, it is our time. It helps me, not just the mowing, but the wood shop, cleaning his gutters, splitting their fire wood and maintenence around their house; it helps me feel closer to him. The winters, go the work shop, throw wood into the stove and work the wood. I will use his tools, ones that he taught me to use, and be with him, think of him. He would joke when I would give him a tool, or router bit’s etc. for a gift “Adding to collection again?” Who would have thought it would be sooner than later.

I guess that this explains what I do, and why I do it. What will I do when he is gone and mom sells and moves? Cross that bridge when I get there. Heck, maybe take a day off.

In a nut shell, as a care giver {part timer} if there is something that makes a connection, work, reading, an old TV show, do it for release and you’ll find it will make things clearer. When I started pop’s chore’s, I looked at as another thing to do. Now I look foreword to doing them. It reminds me of him, what he has taught, what he has said, who he was before he got sick. This man taught me to use my hands and not be ashamed of it when someone that doesn’t looks down at me. “Scott,” he would say,” we all look the same naked, well except for the women. Only worry about yourself and your family, every thing else will come together.” And it does.

Thanks for asking Neil.
Scott
Son Of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #84  
Old Sun Aug 24, 2008, 10:18 PM
Debra Debra is offline
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Scott, my dad receives 2 units of platelets every week and 3 blood units every 14 to 15 days. After platelets, he is usually somewhere in the 50's. Platelets only live about 6 to 10 days, so if your body isn't making them, transfusions will be necessary. Dad gets a pretty good bump with the blood, but drops quickly.
I would talk to the doctor about your father receiving transfusions more frequently. His hemoglobin should not drop so low.
We have also had insurance issues with the Procrit and Neupogen. We've been told they are not "indicated" for aplastic anemia, however, they help to hold Dad's counts a bit longer. We have found that if he gets the injections in the hospital during transfusions, Medicare has been paying for them. You might check into this.
My prayers are with you.
Debra, daugther of Paul diagnosed with SAA 8/07, 2 ATG treatments with no results, 5 mths in hospital, just beginning to walk with the aid of a walker.
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  #85  
Old Mon Aug 25, 2008, 08:18 AM
mannythedog mannythedog is offline
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Hello Debra,

I am sorry to hear your playing the "Medicare game." It seems, at times, getting things covered is like preforming creative financing. Look at this hand not that.

The amount of transfusions that your father is receiving is my fathers stop gap. I was given the task of telling him no if he got to twice weeklies. A year ago, he did not want to be chained to the hospital. I will know more about his progress tomorrow when he gets his blood test. He has only been off the Procrit a bit more than a week. He is showing signs of being extremely tired. He has no strength left, and has a real issue with concentration.

He saw me working on his property this weekend, and wanted me to fire up his tractor for him. I did. I figured if he got cut, or shook himself to the point he bleed out, well, it would have been doing something he enjoyed. Half hour later, he was exhausted. He needed something adjusted that he did not have the strength to do, and I told him to pack it up and go in. The sad part of this is he was making me do twice the work. I had to watch him, and do his chores. Mind you I don't have an issue doing his chores, but if I attempt to do what I do and watch him, I could get hurt by not paying attention. Selfish?

That night, we celebrated his 77th birthday. Today, August 25 he is 77 years old. He joked about not having the breath to blow out the candles.

No Debra, pop will not be able to die doing what he wants, but he will be able to shut down when he wants. If he pushed twice weeklies, I will do what I was asked to do and call him on it. Bob of last summer asked me to. If he decides to do it, it will be his choice; however, I was instructed to argue.

I hope you and your dad get to spend good time together. Hospital time sucks.

Keep us posted, as will I. I will update tomorrow or Wednesday on his progress, or lack of.

Scott
Son of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.

Last edited by mannythedog : Mon Aug 25, 2008 at 08:24 AM. Reason: new signature
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  #86  
Old Mon Aug 25, 2008, 08:13 PM
Debra Debra is offline
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Scott, sending wishes for a happy day on your Dad's 77th Birthday! I know you all will help him blow out the candles, if necessary. But something about your father makes me feel like he'll muster the strength to do it himself!!

I agree that hospital time sucks, and it seems like we spend way too much time there! Dad's been on this schedule for so long, my worry is how long can his body tolerate the transfusions and the excess iron. His ferritin level continues to rise, the Exjade can't keep up with so many transfusions! His kidney's aren't happy either.

I will continue to pray for a miracle - for your Dad and mine. In the meantime, I appreciate your thoughtful contributions to this forum. I find it very lonely dealing with this bone marrow disease. Even our doctors can't give us much definitive information. I am so grateful to have found this website! Thank you all!

Deb, daughter of Paul, 77, diagnosed with SAA 8/07, transfusion dependent, 2 ATG treatments, no response - yet!
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  #87  
Old Wed Aug 27, 2008, 01:06 PM
mannythedog mannythedog is offline
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Pop UpDate 08/27/2008

Today I am home with my 3 year old son with the 24 hr. thing. Not sure who gave it to whom, or is it who???? We are dealing with it together.

Pop is at the hospital getting his weekly 1 bag platelets and 2 units of blood. He has been off the procrit for two weeks tomarrow, and he says he can feel the difference in how quickly the lows come on. He could not take a shower this morning, and would not call me due to him not really wanting what the boy and I have. Mom gave him a alcohol bath so he would feel some what clean.

Guess it will be hard to predict what will give first. The insurance, doctor or pop. He said he will not do twice weeklies.

My son needs me, so I will report later.

Scott
SonOfBob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #88  
Old Thu Aug 28, 2008, 09:26 AM
mannythedog mannythedog is offline
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Continued UpDate 08/28/2008

Continuing from yesterday, pop received his blood products. They let him sit for about 45 minutes to an hour and then re-take a CBC. His plates came up to 35 and his hemo to 8.5. When he was getting the Procrit it would jump to the high 9's to 10's at times and plates to the 50's and 60's. We talked about it and I reminded him it was more to the low 9's prior to Procrit the cut off, but he said he had more Hemoglobin staying power. That I will agree on. He would stager a week on blood, but was pretty regular on platelets.

Belle, my 6 year old, had a tough time the other day. My mom picked her up from the school bus, we share a road, and she saw my car at the house. Mom told her I was sick and vomiting. Poor Belle got hysterical and started crying. Did not dawn on her that I was taking Belle to work on Shot day because of her being upset when pop was sick. She put it together that I had what Pop has. After some explaining, she now understands. I guess that I forgot how much this summer has meant to her spending time with her grandpa, and seeing things most 6 year olds don't see. I made it right, and reminded her of when her tummy was upset and her mom and I were cleaning, of all things, spaghetti off the carpet. She put it together then. She has been such a support for pop, we took for granted she was o.k. Mistake noted.

My 21 year old is getting ready to go home soon, and feels like this may be the last time to see his grandpa. His timing was good this time around. Caught him on some good days, and even got to play some chess.

Will keep you all posted, and I just wanted to let you all know that when you send a comment, I print it for Pop. He really appreciates it, and wanted me to thank you all for your support. He is glad to see many of you are doing well. Oh, and Neil, we got a boat load of rain from the left over storm that spanked Florida and the sun is coming back today, so I guess I will have some more "decompress" time coming up.

I am looking froward to winter, for the first time. Mom needs a table built, and I am having Pop draw up the plans. Even if he is not here, It will still be a joint effort. The Bob lives on.

Thanks for caring,

Scott
Son Of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #89  
Old Wed Sep 3, 2008, 08:30 AM
mannythedog mannythedog is offline
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Pop Up-Date 9/3/2008

Hello all,

I have a few questions to the care givers. I don't field this question to the patients, because I don't want to put anyone on the spot. O.k. I'll cut to the chase.

My father is getting much worse, and has barley been making his weeklies, as far as strength and "head issues" go. {head issues are tiredness, swimmy feelings and lack of concentration} He gets his Blood and Platelets, usually on Wednesday. By Saturday the problem starts. My father has become verbally abusive. He has never been that way in the past, but I have seen the personality change over the past few months. It just got worse over the last few weeks. I called him on it, and he said it was due to his needing blood products, and it was hard to manage his emotions. On the flip side, he feels he can still drive when having this, issue. My mother will not confront him on the driving issue, for she does not want the verbal back lash.

My wife went to see her doctor yesterday, also his doctor, and she discussed this with him. He said there was nothing he could do, but would call Katie at the clinic so she could talk w/ him today. {he will be a captive audience for about 9 hours} He driving has gotten bad enough that he has knocked over the driveway stones along the gutter. [I know that does not sound like a big deal, but these are Pop's stones, and it really bugs him when people hit them} I called him on it, and he said my sister did it. {my sister was in the car w/ him and mom when it happened} My mother told me, because she did not want to be yelled at. She does not want to remember her last days with pop as being abused, so she tells me.

Pop does not yell at me, but gets that "leave it alone" look. I do feel that mom gets it when I leave, even after I drill him on leaving her out of it.

I guess that walking on egg shells is not going to work. My wife found alternate afternoon care for Belle if she knows they may drive somewhere. He always drives. I guarantee he will drive this morning to the hospital, and not use a wheel chair.

I understand this is it. This is his LAST freedom, driving mom to the store, driving to the doctors. I don't understand why the Doctor can't enforce a no drive rule. He had admitted that pop says he is feeling fine, and the Dr. knows otherwise. Any suggestions would help. I really don't want my father upset at me for the rest of his time here, but I could never live with myself if he injured or killed my mother or someone else with the car.

Sorry for the downer, but for those that have been there, I could use some suggestions other than my idea. Take the bull by the horns approach. I guess I don't want to be the bad guy. Wimp. If I need to step up, I will, but I am afraid I would be resented.

Scott

Son Of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #90  
Old Wed Sep 3, 2008, 10:58 AM
Marlene Marlene is offline
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Hi Scott,

So sorry to hear about this new development. Have you thought of getting the social worker at the hospital involved. Both for you and your Dad. They may have suggestions on how to better deal with this. Seeing a decline in mental capacity is difficult especially when the personality changes. I do think your doctor could and should advise him not to drive anymore. He could frame it around "low counts" and how it impacts his reaction times, the potentail to pass out at the wheel, spontaneous bleeding, etc. Also, you may want to ask if there's medication that can help him through some of this. I don't know if it's a good idea personally just because these drugs can alter mental status even more, but it's something to explore.

I remember when my aunt was dying from cancer and in the last few months of her life, her personality changed also. She said some harsh things and just wasn't the person we knew. However, this is not time we remember most. We know her true character and kindness, and that is what sticks.

Just know that any action you must take is out of love and compassion. It takes a lot of courage to be caregiver at times. You know in heart that your dad loves and will always love you.

Wishing you the best,
Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #91  
Old Fri Sep 5, 2008, 12:58 PM
Debra Debra is offline
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Hello Scott, sorry to hear about your Dad's mood swings. Being an independent, strong, hard-working and active man, I can only imagine his personal struggles. My father has wrestled with the same demons, and despises being dependent on Mom and me.

I think Marlene's advice is excellent. Additionally, is there a pastor, close family friend, or does Dad have anyone he is close to who might be able to step in and help you. My Dad's Sunday school teacher has been a wonderful support for our family, but especially for Dad. I occassionally call him and ask him to stop by just to chat with Dad, especially when I notice him acting out-of-sorts or a bit down. It's a nice break for Dad (he must be getting tired of just me, Mom, doctors and nurses!), and has been very encouraging for him. That's my 2 cents, hope it helps.

Scott, you've been a fantastic son and caregiver for your father. I know he loves you unconditionally! My heart goes out to you. Deb
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  #92  
Old Fri Sep 5, 2008, 02:18 PM
mannythedog mannythedog is offline
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Thanks Debra

Thank you Debra,

Pop's pastor and church pretty much stopped the ball months ago {see previous Post about blood drive}. My wife and I attend a small church and the pastors wife Angie, and my wife Angie {yes I get a lot of mileage out of that} are best friends. Consequently, the husbands get thrown in there. Her husband Kenny has been visiting Pop, and was also the one that came by on Easter and gave him Communion.

The rest of those that used to stop by have pretty much stopped. I have said something to one of them, and got the deaf ear. Too bad.

Yes we are very patient with him; however, the doctor has asked him to siop driving, and he won't. Last night i was getting upset w/ him, and he started to turn it on me. I cut him short and reminded him of when I would pull that on him when I was younger and what he would do. He laughed it off and today drove 80 miles away. I have not heard from them yet. Mom won't say anything to him. I have a Sheriff friend, but really don't want to go there.

Thank you again Debra. I always look froward to replies.

Scott
Son Of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #93  
Old Thu Sep 18, 2008, 01:29 PM
mannythedog mannythedog is offline
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Location: Marble, NC
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Pop Update 09/18/2008

Hello all,
I'm stretching the up dates to 2 weeks apart because right now everything is pretty much the same. The last blood test showed his platelets low, weekly transfusions now; however his hemoglobin, which is usually in the mid 6's was 9.1 this week???? The other issue he is now having is his night sweats are burning his skin. He and mom have to change the bed up to 3 times a night. His sweat is also burning mom. The doctor stated it is the ARA-C chemo. He has been on it weekly for a year, and his body is full of it. We have instructed the kids to check with Pop before a hug. They are pretty good about it.

He went to the oncologist today, and they talked about everything. The doctor stated that the liver function tests are high, but the ARA-c is keeping him alive. He still has no blasts, except from time to time... odd. The doctor said the he can get off of the chemo, but he would die as soon as the leukemia started reproducing quickly again. He is still on the track to the same end, just slower than the doctor had predicted.

I asked pop if the burning, being as frequent as it is, was worth it. He said he will see. The next oncologist appt. is the week of Thanksgiving. Funny, last Thanksgiving was supposed to be our last holiday together. Goes to show you never know. I did say a while back that the leukemia had no idea who it was dealing with. Pop takes everything as a challenge. Pop "1", leukemia "0". It will get him eventually, but not when they said, when Pop says.

Oh, and the driving thing. Pop is still driving. Last week, on blood day, he was so tired he couldn't eat. He still drove. The doctor and the head of the same day clinic said NO! Well, we put our daughter in the after school program from Monday - Wednesday. That covered tired/weak days and blood day. Pop asked why, and I told him I could not trust him anymore on those days. He is too close to a potential bleed out, and I was not going to have my daughter and my mom in the car w/ him. He took it well. "She'll have a great time w. her friends'" he said. Man is he stubborn. I have been accused of being Son of Bob more than a thousand times or so; however, my wife does keep me in check.

Will keep you posted, and I have fresh pictures on myspace.com/schultze1963

Scott
Son Of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #94  
Old Sat Sep 27, 2008, 06:32 AM
Wayne O'Shana Wayne O'Shana is offline
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Location: Vista, CA
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Black box for Erythropoiesis Stimulating Agents

Hi Scott:

A quote from bottom of first paragaph of CMS memo: "We have narrowed the scope of this final decision to make no national coverage determination (NCD) at this time on the use of ESAs in MDS." Most normal people would read this and think that your dad should get his Procrit shots as needed. Your comments every now and then about the care (or lack thereof) that your dad has been getting don't give me a warm and fuzzy feeling about his doctors.

For the full decision document go to the second page of the News and Events Forum and then the link at the bottom of "Medicare May Restrict Access to Growth Factors" June 2, 07.

Best wishes...
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Middle-aged (83 yo) dx Nov 4, 1997 w/MDS-RA+pancytopenia, tx about 18 mo. Responded to EPO+G-CSF. Ferritin dropped from 2500 to 480. Three non-fatal heart attacks, five non-fatal strokes and a lot of TIAs. Otherwise in very good health.

Last edited by Wayne O'Shana : Sat Sep 27, 2008 at 07:17 AM. Reason: Deleted faulty URL
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  #95  
Old Sun Sep 28, 2008, 10:28 AM
mannythedog mannythedog is offline
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Location: Marble, NC
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Thanks

Thanks,
I am looking into this, I will research it.
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #96  
Old Wed Oct 8, 2008, 09:09 PM
mannythedog mannythedog is offline
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Join Date: Sep 2007
Location: Marble, NC
Posts: 103
Pop Up Date 10/08/2008

Hello,

Pop is hanging in there. He did not get any blood product this week; however, he did get his chemo. He was boarder line on stats, so they opted not to give him any. His days are spent watching t.v. and sleeping in bits day and night. He has not been able to sleep a full night for a long time. The sweats keep getting him up. Mom changes the sheets 3 times a night. The chemo is still burning his skin due to the amount his body had absorbed, and his liver count is climbing every test. Like I said, the doctor stated without the chemo, or the blood as a set, he has got weeks.

He is setting goals for the holidays again, but he is so miserable. Mom and I told him he can let go if he wants. We tell him we do not want him to be miserable and in discomfort. He also is getting the pain, pressure in his chest, but much worse now and all the time. His headaches are also 24/7 now.

I had to do some rebuilding and welding on his tractor. It has been down for 2 weeks now. I am hoping he can take another spin when it is back together. He has been on it last month a couple of times, but not for long. He figures he can die anywhere. Have not seen him drive lately, but I have seen mom go solo a few times. I am glad he has limited his driving. He has mentioned his eye sight is getting worse and his eyes hurt all the time.

I guess to sum it up, pop is bad off. The discomfort level is very high. He tries to blow it off, but he just can't anymore. I just want him to be comfortable.

Will hear from me in 2 weeks.

Scott
Son of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #97  
Old Thu Oct 9, 2008, 02:13 PM
Ruth Cuadra Ruth Cuadra is offline
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Scott,

It is painful for all of us to read about your Dad's decline, but I can only just imagine how it must feel to all of you who are his family. Given the fact that he is in so much discomfort, I wonder if you have considered the possibility of Hospice care. Hospice organizations (there may be a few different ones in your area) focus on compassionate care for people facing a life-limiting illness with palliative care tailored to the individual's needs and wishes. Support is provided to the person's loved ones as well. If you are interested, I'm sure you can get information from your Dad's doctor or by contacting the National Hospice and Palliative Care Organization.

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #98  
Old Fri Oct 10, 2008, 08:10 AM
mannythedog mannythedog is offline
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Hospice Care

Hello Ruth,

Thank you for responding. We have talked about Hospice, but if he takes that route, he has to stop treatments. Medicare stated Hospice is for dying comfort only. He has to be off all treatments to be eligible.

This is our problem with Hospice. Pop was ready, but after the doctor gave him the Christmas speech, Pop decided to stick it out. This doctor, his family physician, is very anti DNR, if you know what I mean. Stay alive at all costs and discomfort.

I can not imagine what he is going through, and that is a tough decision, I can, and will be here for him and mom... and that stinking tractor.

Thanks again Ruth.

Scott
Son Of Bob
__________________
Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #99  
Old Fri Oct 10, 2008, 08:07 PM
Dick S Dick S is offline
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Quote:
Originally Posted by mannythedog View Post

I can not imagine what he is going through, and that is a tough decision, I can, and will be here for him and mom... and that stinking tractor.

Scott
Son Of Bob
Scott, keep working on that stinking tractor. You already know what it means to your dad and it will help you where it is needed.
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
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  #100  
Old Tue Oct 28, 2008, 10:48 AM
mannythedog mannythedog is offline
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Pop Up Date 10/28/2008

????????????????,
O.K. I guess that explains it. Pop had his tests today. He has been off chemo {ARA-C} for 4 weeks Thursday the 30th. He received 2 units of blood last week, but no platelets. His tests today were Platelets, 91; Hemoglobin, 10.1; whites, 5.6. O.K. Any clues? Last week plates were 25 and hemo 8.2. He still feels crapy, {no energy}and that could be due to not being physical for 6 months.

I am guessing that the doctor will order another bone marrow biopsy. He has been on the Ara-C for a year. 50mg's weekly under the skin. Blood and plates when needed, and twice a week blood for 2 weeks. Thought he was going to pass 2 weeks ago due to how bad he was.

The doctor stated he would be gone last winter. I don't want to get my hopes up. He has not had the "big test" to show if he may be blasting. Do leukemia cells mimic platelets in the test and make it look like there are more good than bad? Have not gotten answers to that yet.

Feed back on this one would be great. I know pop has not followed the rules on this one, and has been, somewhat of an experiment; however, I will not allow myself to celebrate yet.

Scott

Son of Bob
__________________
Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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