Dad has hypo-cellular acute bone marrow Leukemia

[mannythedog]

Hello,

I am new to the site, and at the end of August, my father was diagnosed with MDS. As his platelets continued to drop, avg of 10 per week, they conducted a bone marrow biopsy. The stains came back as hypo-cellular acute bone marrow Leukemia, not MDS.

I just returned from the doctor with my mom and pop. He received his first injection of
Generic name: Cytarabine
Trade names: Cytosar-U®
Other names: Ara-C, Arabinosylcytosine.

He has been told that he will be on this indefinitely, for he opted not going to the hospital for 4 weeks of intense treatment. Having done the research on the clinical trials, he is 76 years old, he felt he may not make it. His platelets are at 35 toady, and will drop even quicker now that he is on the chemo.

I guess what I am wanting to know, is if there is anyone with this same condition. He was a volunteer firefighter for 30 years, and an auto mechanic from the late 40's to 1992. He was involved with allot of bad smoke and chemicals used in the auto industry that are not manufactured anymore.

I am looking for time left, those in remission, and since his platelets are down to 35, should I have hope.....be blunt.

Pop is in good humor, still joking but tired.

thanks,
Scott

[choijk]

Hi Scott,
I haven't been posting as much lately but I just had to comment on your post. Please, ALWAYS have hope! I know it's a lot of information to soak in all at once, but there is always always always hope. You have to believe! I don't really know too much about the chemos for AML, but there is a forum I came across when I found out that my dad was dx with MDS. It's on the leukemia-lymphoma website

http://ubb-lls.leukemia-lymphoma.org/cgi-bin/ubbcgi/forumdisplay.cgi?action=topics&forum=Living+with+AML&number=21&DaysPrune=30&LastLogin=

I've noticed that there are many patients on the forum that took the ARA-C. There is this one post by the user name pigduck who delves into her father's experiences with MDS , turning into AML and her father's experiences with ARA-C.

I hope this might help. I'm sorry that I can't share with you any personal experiences with any of the drugs you've mentioned. But I just want you to know that this is a wonderful forum with many people that not only care but have a wealth of information that they can share with you.

Best of luck,
June

[mannythedog]

Hello June,

Thank you for the reply. Pop is in good humor, but is the kind of man that will get itchy is he sits for 5 minutes. His body is eating his muscle mass, and I cut him off from the chain saw, log splitter and other extraneous activities. We live in NC Mtn's and he and mom heat w/ wood.
My sisters come and visit and help with the chores and emotional help for my wife Angie me. Even at 44 and being the youngest of 4 kids, its tough. I keep the tough exterior police chief look for pop, cause he is very emotional, but alone, well your a child too.
He refuses to do weekly transfusions when it becomes necessary, and depending on how the chemo rides, he may drop that also. He has been, and is, extremely, pro DNR and quality vs quantity of life man.
We moved near my parents for this reason 9 years ago. My wife felt we should stay near just in case. Boy is she good. I figured pop would have dropped in the field or on the mtn. cutting trees, or fall off a roof installing chimney liner's for fun cash. He never really slowed down after retirement. But for him to waste away, I was not ready for that. I'm working on it. It's been easy to joke death w/ him in the past, but to see it creep in slowly, I'm working with it.
Thanks again June, and good luck to you also. I will scan the other site.

Scott, Son of Bob

[Joy in Toronto]

i came across your thread and realize it hasn't been updated in awhile. i am praying for your family. my father was diagnosed yesterday with AML (progressed from MDS). we don't know treatment options yet, but it sounds like the agressive chemo is way too hard for most elderly. i hope it's working for you.

best
Joy

[mannythedog]

I want to apologize for not updating. This ordeal has been, to say the least, educating. I have spent many days on the net, as well as reading literature and picking up pop's chores.

O.K. enough excuses. My father is still here, hanging in. He has been on the ARA-C chemo and Procrit since late September, and neuprogin since late October. The 3 weekly shots have been slowing the progression of the leukemia. The doctor saw him in January, and was shocked to see him. Pop is quite stubborn. He days, however, have been numbered from the start.

Now the facts.
Fact #1. He did not choose the 30 day stay {aggressive} chemo, for the outcome was still going to be the same. He wanted to be at home, and enjoy his grandkids, and my mother for the time he had left; furthermore, he set some goals, get his affairs in order, and make it through the holidays. Done. He is very satisfied.

Fact #2. Pop is on his 12th unit of blood. His iron levels were already high at this point, and he is now showing external signs of too much iron. The bronze colored skin and the spots. His blood cells are tear drop shaped, even after the last transfusion, and his platelets are back in the teens again. Needed a bag this week again, only 3rd time since October because of the Procrit, but the blood bank was out. Still waiting.

Fact#3. He will never get better. He has reached his plateau back in December, and had been sliding since. He is nearing the point of having to drop treatments due to his body showing early signs of rejecting them. Once he stops, it will be a matter of weeks.

Fact#4. His leukemia was brought on by environment. Mostly benzine. Due to his past as an auto mechanic and volunteer fire fighter since the early 50's.

And finally, they had diagnosed pop with MDS in August of 2007. They then took a marrow test and said he did not have leukemia. Ten days later the stain test came in. Practicing physicians. I will not blame them. This one was tough to find, and his February 2007 blood test had no red flags. Was sleeping in him and woke up fast.

Joy, when all the tests have arrived, sit with him and let him make his own decisions. If it is MDS, you could get years. If it is worse, Pop's journey may give you a map. Be thankful that it does not hurt. Pop is sleepy allot, and is mostly aggravated due to the fact that he was Mr. out doors. Everything was a contest to him. Now he gets to see his son do most of it for him. That is the tough part.

I am thankful every day that I can swing by and see my dad. We have had "the talk", no not the one that I got in middle school, the other one. Thought I would break up the moment. We're o.k. He knows that the next adventure awaits him. He just so much enjoys being here with my mom and his family. So we make like it's just another thing. A part of life. He is o.k. with that. I'm not, but we all will loose our parents some day. I have come to terms with that. I will miss him, but savor every day till then.

Joy, if you need to talk, I will be here. God bless you and your family.

Scott.
Son Of Bob

[mannythedog]

Hello,
Today is the 20th of February. My father, as last read, received platelets last week on the 13th. His levels after the platelets went to 56K. Yesterdays blood test showed them at 16. He needed more, so after todays, he is now in the high 40's. Not real impressive.

WHAT IS THE DIFFERENCE? Prior to the 13th, his last platelet infusion was two weeks before Christmas. The last two had neuprogen given the same day, instead of the day after. Am I close to something? The research that I have seen stated at least a 24 hour waiting period; however, the doctor changed it up so he didn't have to make a visit to the hospital 4 days a week. Tue, blood test; Wed, blood or platelets; Thur, chemo and neuprogen; Fri, neuprogen. Basically, Fridays shot has been given each platelet day.

Any feed back??? Any history??? Would love to hear. For all I know his body finally stopped making platelets, and his end is near, but if someone out there has experienced this, I would love to hear from you.

Thanks.

Scott
SON OF BOB

[Birgitta-A]

Hi Scott,
Your father is admirable!

I am afraid I don´t know anything about how Neupogen may affect platelet transfusions. There are several drugs coming for low platelets. The first drug - Nplate/AMG 531 will hopefully be applied by FDA before summer 2008 for Idiopatic Thrombocytic Purpura. Perhaps your father could get it "off record" because Nplate is tested for MDS in phase I/II trials.

http://professional.cancerconsultants.com/oncology_main_news.aspx?id=41054

Kind regards
Birgitta
68 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal 4 days with transfusion every 6th week and Neupogen 2 injection/week

[mannythedog]

Hello,

Pop is getting tired, and more winded. Last night at supper he was dizzy, and yesterday morning after having syrup on his waffles, he got dizzy. He now has to watch the rich and high in sugar foods. I am afraid that his platelets are going to be low again this week, and his red cells have taken on a "tear drop" shape. This, I have read, is causing the anemia, and maybe his dizziness.

I will keep writing what happens, as I will hope it will act a a guide for those that have family, or themselves that may have it. He is not in pain, just discomfort after the shots. {see past posts}

More later.

Scott
Son Of Bob

[mannythedog]

Pop went and received more platelets, and a unit of blood yesterday, 2/26/08.His count was lower than last weeks upon completion of Tuesdays blood test. His white count is also down, under 1.0. To get my thoughts on this, read the past inputs I have written.

Pop was real tired this past weekend. He is also swelling. His mid section is at 44 inches. He used to have a 36 waist. His copper color has subsided a bit, but with the fresh blood yesterday and today, he also gets a neuprogin today, his copper tint may return. I would only hope that the blood transfusions don't increase, because he can not handle the iron. It has been 4 weeks since blood, one week since platelets. One unit each week for the last 2 weeks. He, in the past, would give blood in a regular basis to keep the iron levels down.

Pop had his lobster tails this, last weekend. He was real happy. We figured he would need blood, because the syrup in his waffles on Saturday morning and the steak and lobster on Saturday night, mad him very dizzy.

He is getting a bit down, it has taken longer than he, and the doctor has predicted, and he is anxious. I wish I could help him, but I will just be there for him. Not really much more that can be done.

He goes to see Dr. Shay tomorrow. Will add to this post if anything changes.

Once again, Angie and I love every minute we can see him, and Belle, our daughter age 6, adores him. Pop gets a hoot out of Reagan, our son, 2 1/2. I just hope he remembers something of his rough and gruffy grandpa.

In closing, I fear his bone marrow has stopped producing to keep up with the deficit. I will continue to write, so we can keep a history of his progression. I hope this helps others. Please let me know.

Scott,
Son Of Bob

[Ruth Cuadra]

Dear Scott,

It's so generous of you to record your father's experience for those who end up on the same path in the future. He's a lucky man to have you out here looking for information and options for him and to have his family nearby.

Do you know what the cause of his swelling is? Often it is the result of congestive heart failure, which in his case might be the result of his having to deal with decreased hemoglobin over a long period of time. Lasix can help reduce the strain on his system from so much fluid and make him more comfortable as well. Is it possible to increase the frequency of his transfusions so he doesn't get so low that the shortness of breath and weakness are so difficult to deal with?

Regards,
Ruth

[mannythedog]

I took pop to the Dr. Today. He insisted on driving. He does well, but it tires him greatly. I guess him being from the driving generation, he still likes it a lot. I, on the other hand, would prefer a transporter. Star Trek generation... Oh well.

The Dr. was surprised to see him, yet again. The outcome will still be the same, but it still gives the Dr. a meter to go by. Pop is a bit unusual, and is actually growing hair at the chemo injection sites. I will say, he is a bit odd.

I used to treat every Friday as a completion point, you know, end of week, pay day, the ensuing "honey Do list". Now it is every Tuesday. Pop's blood test results. How’s the platelets, the RBC'S, white count? Will he need platelets this week? Blood? As you all know, he had blood 3 weeks ago, and this week. Two units each time. He also received platelets each of the last two weeks. One unit each time. This is all on top of the weekly injections.

The Dr. Stated that he can go indefinitely this way. He even has patients that get two transfusions a week. Pop won't be game for that. He will stop if it becomes more frequent than one a week. Pop at this point is one step forward, 2 steps back. He is getting, somewhat, depressed. That is why no one argues with him driving. He enjoys the trips taking mom to the store, yes he sits in the car, {mom leaves the window cracked} Ha, Ha. He also drives himself to the visits to the hospital. Its only 5 miles each way, and we're in a rural area. Until he gets so anemic he gets dizzy sitting, I will allow it. Sounds so mean of me to say that. At what point do we children allow ourselves to make decisions like that?

Pop is a rock, but not an island. He will be missed by most, and is loved by many.

I will keep you posted on his progress.

Scott
SON OF BOB

[Chirley]

I know what you mean Scott. I'm the one with the illness, not my father. He has a minor heart condition but is otherwise a fit and able 80 year old. He drives almost every day in city traffic. I've noticed the last year or so that his driving is becoming quite bad ( having said this, he has never been particularly good ). He doesn't want to be seen as a slow, indecisive old codger, so he goes faster than he should and takes risks that he shouldn't. I am very reluctant to say anything to him because he is such a proud, independant man and I think that losing his ability to drive would be devastating to him. I'm worried that he will become dangerous to himself and OTHERS and how to tell him gently. It almost feels arrogant to think of myself in the position of being judge of my father. One of lifes' tribulations, I think. Chirley

[Neil Cuadra]

I'm worried that he will become dangerous to himself and OTHERS and how to tell him gently. It almost feels arrogant to think of myself in the position of being judge of my father. One of lifes' tribulations, I think.
Here in California, the Department of Motor Vehicles lets you report someone you think is no longer a safe driver, and ask them to keep the source anonymous. See Medical Conditions and Traffic Safety (http://www.dmv.ca.gov/dl/driversafety/dsmedcontraffic.htm#know).

Reporting them this way doesn't solve the problem of their losing independence, but it can help get an unsafe driver off the road, for their own protection and for the safety of others, without the driver necessarily blaming their family. Nevertheless, it's an awkward and unfortunate situation.

[mannythedog]

Pop called me at work this morning. His platelet count was 15. He had received a bag last Tuesday {7 days ago} and he was at 48 after the re-fill. This makes 3 Weeks in a row. His hemoglobin was 9.1. He got two units last week, and went to 9.7. So .6 points in a week. I fear that his bone marrow has finally stopped producing. That along with his blood cells having the tear drop shape, doesn't look good. I guess I am trying to put a time line on this whole thing. If the math works the way it has in the past, I would think he will need a blood transfusion next week, along with a bag of platelets.

His spirits are low today. I would expect that. He has planned on dying for a few months now, but it has taken a toll on him. I can now see through the happy face he puts on for me.

I will take my kids to see him. Ol' Pop needs hugs. I'll give him one too. Lets not forget mom either. She is having a tough time. I wish I could get her to communicate with other, long time married, women that have had lost a partner. She is very private.

Thanks for the response, and support.

Scott
Son Of Bob

[mannythedog]

Hello all,

I hope all that read this post are doing well.

Pop had his blood test this morning. Like I said in previous posts, my week runs Tuesday to Tuesday. His hemoglobin was just at 8.5 ( they want him to go another week; gonna be rough on him) but his platelets were 13. I guess it is safe to say that after 4 weeks of platelets his bone marrow has shut down. I was not surprised to hear this news. He has been using a water pick to clean his teeth, and the other day, it made his gums bleed really bad. He also dropped a piece of fire wood on his leg, and he would not stop bleeding for almost half an hour. I scolded him for moving the fire wood. He knows I handle it for him and mom; however, I hear tell, he has been sneaking tractor rides thinking i don't know about it. I guess it's his turn. Lord only knows the sneaking I thought I was getting away with. I guess we are our father's sons.

Easter is in 2 weeks. He really enjoys lamb with pear half's and mint jelly. I put in an order for him. Boned and rolled with no skin. Just the way he likes it. I'm glad my kids get another big dinner with him. Just maybe, my little boy will remember him. My little girl, see last post's, is doing a lot of snuggling with her Pop. She understands. My only other issue with her is explaining cremation. Any suggestions on how to explain it to a 6 year old? I was thinking of showing her Star Wars 6. She really enjoys star Wars. Darth gets cremated in the end. may open up a discussion.

Oh, in closing, I would love to post a picture of him. Does anyone know how? in the mean time, you can see him, and us on http://www.myspace.com/schultze1963 all are more than welcome to view.

God Bless All.

Scott
Son Of Bob

[mannythedog]

POP UPDATE 17 MARCH, 2008
Hello,

I know that I am a day early with the Pop Update, but he was feeling really bad this morning. One of the few duties he has kept around the house is tending to the wood burning heater and doing the dishes after the meals. While he was doing the dishes this morning, he got really dizzy and lite headed. Mom had stated he looked pale when he got up; however, he continued his routine. Mom made him sit down and called the hospital.

The hospital performed his blood test one day early, and his Hemoglobin was at 7.5 and his Platelets were 13. He is scheduled for 2 units of blood and one unit of platelets tomorrow {3/18/08}. This should give him a boost for a while, but I fear that the need blood transfusions will be more frequent, sooner than later.

Now The Good News:

The blood drive for Pop is on for May 1st, 2008 at the local Ingles in Murphy, NC. from 2 pm to 7 pm. I had tried to get his church to sponsor it, and mom attempted to get the pastor to give dad a communion around last Christmas, well, the church, and the woman they appointed to head the project dropped the ball on the whole shooting match. I had all the leg work done, all I needed was a sponsor with a parking lot. Well, God did answer prayers. My wife Angie was talking with her friend Angie,{I know, I know, it can be confusing}, about the difficulties over the last 2 1/2 months getting things put together, and in less than a day, the other Angie, got the blood drive put together, and sponsored by the Murphy High School Bull Dogs Quarterback Club; furthermore, her husband Kenny is a pastor at the Maltby Baptist Church. He felt it would be a honor to go to my fathers house and give him communion with his family on Easter Sunday after church. So, with just a mention of issues, every thing got handled in less than a day by people that care. That act of kindness gave my father such a boost.

This evening I stopped by after work to talk with him, we average 5 nights a week, he looked rough, kind of like he just run a marathon, but his spirits were up. He said he told the nurses at the hospital that he needed to hang in for Angies graduation in May, my wife went back to school, and what had transpired with the blood drive, and the nurses stated they were going to hang up posters to notify everyone. He was very humbled by all the people that really didn’t know him to step up to the plate to support him.

My father has been, and is a very proud man, one that did all the planning and organizing for people in just his condition. I told him to relax and let someone else do the driving for a change. "Pay It Foreword." I get it.

I would like to take this opportunity to thank my beautiful wife Angie for her devotion and caring for my father; Kenny and Angie White for being there and being such good friends; B.J. Thompson, President of the Murphy Bull Dog Quarterback Club for being who she is; Kimberly Wheeler of Blood Assurance of Chattanooga, TN for being so patient; Ingles of Murphy NC. for the parking lot; My employers for being so understanding and All of those that are willing to bleed for my father and everyone else who needs your help.

It’s not until your a part of something like this that you realize there is just not enough blood donors. I have had such an education. I am sorry that it had to be under these circumstances, but the need is there.

GIVE PLENTY, GIVE OFTEN.

Scott

Proud to be
Son Of Bob

[Neil Cuadra]

Blood drives do deserve more attention, Scott. When someone donates blood, everyone wins. Obviously, those who need blood are the direct beneficiaries, but the donors get the honor of helping somebody else, whether it's a friend or a stranger. And the whole community wins when people support each other in such a personal way.

Bob may get as much from the good feelings directed his way as he does from the blood collected on May 1st. And if not all of the blood has the blood type he needs, or there's more than he needs, the rest will go to others in need.

Do you have a plan for spreading the word around about the blood drive?

[mannythedog]

Neil,
Blood Assurance, out of Chattanooga TN. is handling all the advertising. a month prior, they will send posters to us, as well as, articles for all the local news papers and radio stations. They will also send out mailers to the "frequent bleeders" that are ready to give so they may also attend.

I will be leaving work early that day so I can be there to bleed and help out. I was going to give platelets, but the busses are not equipped for that. Platelets are in great need, and have a very low shelf life. My father and I have also noted that, prior to his getting worse, he went longer on fresh blood than the out dated stuff. I have done some research on this, and found it to be very possible.

Thanks again for your, and everyone's support. I wanted to let you know that my father has friends that live far away, but go to this site for updates. Thank you for being here.

Scott

Son Of Bob

[mannythedog]

Just a quick update and addition to yesterdays post since Pop went early for blood this week.

Pop got his blood and platelets today. His hemoglobin only went to 8.5. They usually give him blood at 8. He was at 8.5 last week. His platelets rose to 54; however, you have to remember that the 2 units of blood also have platelets in them, so he got a "piggyback" of platelets in the whole blood. He was a little discouraged by the numbers, but understands that he is on the down swing. We had a long talk last night about...stuff. He is o.k. It's just tough acting o.k.

He looks much better, but is tired. It was a long day at the hospital. He is looking foreword to his lamb and mint jelly this weekend.

More later.

Scott
Son Of Bob

[mannythedog]

Hello,
Blood tests came back Tuesday. He will need platelets {15 now, already having issues with clotting}; however, due to the shortage here, they said he'll have to wait.

I will have to say that he is now on them weekly. It has been over a month, and each week he has needed them. He has taken precautions to keep himself from bleeding, and has turned down the water pick and moved to an electric razor. The hemoglobin was about 8.5. The Procrit is still doing its job, but from the looks of it, he will need blood next week. I don't think they will force him to stretch it out again, due to how bad he has felt when it gets too low.

He had his Easter this past weekend. Another goal he has set for himself. The pastor did a great job with communion at the house, his first in-home, and pop really enjoyed his Easter dinner. He has to curb his appetite on the rich stuff. The low blood count and anemia is making him dizzy when he eats rich foods.

His next goal is to see my wife graduate in May. She had gone back to school for a business degree, {she works in the medical billing field since 1994, so any questions on insurance/Medicare/Medicaid just ask} and he really wants to be there to cheer. Boy, they sure do love each other a lot. Could I be any luckier.

Goals. Never thought much about them. Have set them, met most of them, even made a few, ha, ha..... but when you see someone that uses goals to define what time is left in life on earth, kind of changes your perspective. Makes you want to try harder to create more, because you don't want to be caught without having any. I have realized that goals define who we are. Setting goals makes us strong, and not meeting them while giving our best can make us stronger. So I try harder next time... right?

Pop is in good spirits. He had a chance to see most of his family over the past weekend. Sure, some live very far away, and some are out of the country, but ALL did call and talk with him. He is special to us all.

More next week.

Scott
Son Of Bob

[mannythedog]

Hello,
As we all know, see last post, pop did not get his platelets last week. He went in for his blood test yesterday, and his hemo was down to 7.8 and his platelets held at 15. His white was at 1.7. The Neuprogen is doing its job; however, I feel the Procrit is failing. He has been getting severe headaches this past week and he has a terrible pain up the left side of his neck to his inner ear. He also has developed a "metal" taste in his mouth that gets worse every week. Chemo? He has had a loss of appetite since Sunday, has been doing a lot of "restless" sleeping since Thursday, and has also developed a gag response to his face mask. It made him vomited yesterday on the way to the blood test. He stated it had a smell he's been noticing lately. Mom is looking for alternate masks.

His driving is becoming a private issue with my mom. We talked yesterday. He likes to drive her to the store, hell sit in the car and wait, and to his appointments. Last Friday, Neuprogin day, and the day after Chemo, he has had issues. She stated they were things pop would never have done. {pop taught drivers ed for several years for the AAA when he was in his Early 20's} I wanted to talk with him, but she said she will see how he does this week and make a decision. I worry for the two of them. Maybe make a compromise, and let him drive on "non-shot" days.

He is supposed to get 2 units of blood and a bag of platelets today. The hospital has not called yet. I heard on the radio this morning that there is a major shortage in this area of 0+ and platelets. I hope he gets a call today.

Belle, my 6 year old girl, went up to see her grand pop Monday after school. He wasn't feeling well, and slept most of the day. He woke up for her and then the two of them snuggled on the love seat and fell back to sleep. She loves her grand pop. I feel he has hung in this long for her. They really enjoy there time together.

I will update ad usual, and I hope this helps others.

Scott
Son Of Bob

[mannythedog]

Hello again,
Well, go figure. Pop had such a bad past couple of weeks, I thought that I would soon be telling you of his passing; however, he got a double pump, blood and platelets, last week and had such a reaction to it Wednesday and Thursday, hot and cold sweats, head aches, chills, nausea and not being able to sleep, well Friday morning he woke up early, told mom he was hungry and ate breakfast. Went for a hair cut and took a short nap. Felt good Saturday, and Sunday was slipping a little, but it was such a nice day he got on his tractor in the early afternoon and pointed out the needed yard work, not that I wasn't already doing it, but I did humor him. I installed the mower deck on his Steiner tractor so I could mow on Monday after work, and he did it. I scolded him a little, because he could have gotten cut, but he said he would rather die on the tractor than in a chair or bed. Touché'

He got his blood test today, and he needs nothing but chemo and his Procrit and neuprogin shots. Hemoglobin was 8.7, platelets 23 and white count 1.3. Not to shabby, considering he has been getting platelets for the last 5 weeks. He did mention that the platelets he received last week were the yellowest, fattest bag he had ever seen. I guess someone out there has super blood. Thanks. Pop really needed the boost.

I am worried about his progression, and after this high, how bad will he take the next low. I, and my family will enjoy the high while we have it.

Hope all here are doing well.

Will keep up dating.

Scott,
Son Of Bob

[Chirley]

Hi, pleased to hear things are going better. Also good to hear someone else has noticed the difference in volume from bag to bag. I know platelets are different to RBCs but the packaging is the same. This last time I had my blood transfusion the bags of blood took forever to be infused (over 24 hours) and the nurses kept commenting that they had never seen such fat blood bags. Sometimes the bags have 230-240 mls in them, this time every bag had in excess of 300mls. I think some of the volume must have been white cells though because they usually change the leukocyte filters after every 2nd bag. This time the filters gummed up after every bag and had to be changed because they wouldn't let the blood flow through. It makes you appreciate that they use the filters because I wouldn't like to think of the reaction I could have had to that number of white cells otherwise. Best of luck to you and your Dad and I hope that things stay on a plateau for as long as possible.

Chirley

[mannythedog]

Hello all,
Pop came down from his high about last Thursday. he slowly fell into his low over the weekend, and was really tired last night when i went to see him. This morning he got his blood test, his platelets dropped to 12, his hemoglobin to 7.7 and his white count is hanging at 1.2. I am glad for that, because his last transfusion gave him such a reaction, it had mom scared. I am afraid he may be rejecting the blood. if he gets a refill tomorrow, I'll keep you all posted.

Belle has been with pop this week due to spring break. They have been doing the 100 piece puzzles. It amazes him that she will put one together from the bottom up. Today they are starting a 350 piece. Pop is excited. They nap together, and Belle has remarked that she enjoys her naps with her Pop. I am glad the dad gets to spend time with her. Time that she will remember.

Don't feel real talkative now, but will write more when i have more info.

Thanks.

Scott
Son of Bob

[mannythedog]

Pop received his transfusions yesterday. 2 units of blood, one platelet and a neuprogin shot. The nurse had an issue with his veins. He has developed scare tissue from receiving the transfusion, that they are considering installing a port. I have seen them, but don't know much about them. I am sure the nurses will cover care with him and mom, but should there be any other things I should know.

On another note, his numbers did not come up quite as much as we had hoped, so I guess well see next Tuesday. He compares each transfusion with the last, and this did not have the "boost" the other had. He gets chemo, Procrit and the 2ND neuprogin today. He'll be out till Saturday, then we'll have an idea what to expect.

He is glad he'll be here for my wifes graduation. One of his goals. He is now setting another one. It is on the 1st of august. 56 years w/ mom. Wow. The joke is mom's a saint. Pop gives us a hardy, ha, ha. Good to know I can still mess with him. I do miss so much the times we worked together.

Scott

Son of Bob

[mannythedog]

O.k.

I don't know what you all heard, but here is the poop. Last Wednesday the 23rd, about 10 a.m. I was under the dash of a VW new Beetle, {dang Germans}. I was in one of those contorted positions, and got lite headed. I got out, took a breath and shook it off. Climbed back in, and the under side of the dash started spinning. I was attempting to take voltage readings at numbered pins, but I did not recognize the numbers. I guess you could say I forgot how to read numbers. I pushed my self out and put my head between my legs to get the spinning and nausea to stop.

Todd and Mike helped me to the office, where I continued to spin. I had hoped it would stop, and I attempted to writ repair orders, but I couldn't make the keyboard work. About 30 to 40 minutes in, Mike ran me to the E.R. Thanks to mike, I know what 70 mph feels like through town. {thanks mike}

Well, lets make long story short. After hours of tests and a day of observation, they believe I had a small stroke, or a T.I.A. "transient ischemic attacks." WOW. I am Son Of Bob. Well I am home now, and the VA should pick up the rest of the diagnostics.

The computer screen is making me nauseas, or is it the looking up and down. Either way, I am O.K. {till the next time} I promise Todd, I will keep my "episodes" at the house next time. LOL

I mostly feel bad for Pop. Here he was getting his platelets in one side of the hospital while I was in the E.R. We did not tell him until later. He came by the room yesterday after chemo, and that winded him pretty good. Good ol' dad.

Poor Angie felt bad. She is used to me being on the other side of the rail. New experience for her. I told her thats what she gets for marring a crusty old guy.

Don't forget to BLEED FOR THE NEED! Pop's blood drive is on Mat 1st, next Thursday!

Pop had a rough night last night, Thursday the 24th. He ran a temp and was aching real bad. Mom was worried, and neither of them slept. Pop's reactions to the platelets were worse than usual. When he gets blood and platelets, it gets real bad. The itching is worse today, also; however, his spirits are up since I came home. With all his problems, he still worries about his kids.

I am good, Pop is holding in there, and the Schultze's, as usual, are batting 0 for 100. So what else is new. Go with what you know.

Angie says I can weed eat next week as long as I don't fall over. She keeps looking at me like I'm going to explode... Ha, may be I just will.

More later.

Scott

SonOfBob

[Marlene]

Wow Scott....That's pretty scary. I hope you get an answer to your problem quickly.

wishing you and your Dad the best....

Marlene

[Chirley]

Hi Scott,

Sorry to hear about your ? TIA. Scary isn't it ? That vertigo feeling is NOT nice !! I have been known to walk straight into the wall instead of down my hall. But the real bad one was when I fell off the toilet because the room wouldn't stop spinning. I can laugh about it now but was embarrassing at the time.

Try explaining to the doctor putting the stitches in your eyebrow that you cut your eyebrow falling off the toilet. :o

I found that I couldn't remember how to talk or that I would be half way through a sentence and would go completely blank and not remember what I was talking about. I'm very lucky that my friends are understanding and tell me what I had just been saying and then I remember and can finish my sentence.

I have been started on aspirin to thin my blood, has this been suggested for you ?

I hope they can find the cause for your problem and start the right treatment. If it happens again, go straight to the ER please, a delay of even 1/2 an hour in treatment can mean the difference between normality or permanent damage.

Best of luck

Bye

Chirley

[mannythedog]

O.K. let me get you to understand one important thing. Guy's, from birth, have been trained to "shake it off". It's what we do; however, my wife stated that if I ever do that again, she'll give me something to fall down about. Something about a woman that can kick my rear that makes me listen.

I had also wanted to ask you about itching. When you get your blood, do you rash and itch? Any takers out there? I'm not sure if it's blood or platelets doing it. They irradiate them both to knock down the anti-bodies, but maybe some are making it through. Just curious. Pop had a real bad itching episode and temperature last transfusion.

Scott,
Son Of Bob

[Marlene]

Platelets were the hardest on John from the second transfusion on. Eventually, his red cells gave him hives but not as bad. I assume your Dad is taking benedryl for the itching. John had to take 25mg for red cells and up to 75 mg for platelets. He would be out of it for a good 24 - 48 hours from it though.

Also, if they ran the platelets in too fast, he would react more. One time he was covered head to toe with hives. They stopped the platelets and had to give him steroids. Once they calmed down, they started up the transfuion at slower rate.

After that episode, he would get hives off and on for no reason. To this day, he gets them when it's cold out and walking, or from friction. So I think that one bag of platelets really set him up with something. He still gets them but they seem to be better now that his own platelets are up to 54K.

He now takes 5mg of Zyrtec for the hives so we can take walks. So talk to your doc about it...you may want to try it post transfusion and see if it helps. It's now available over the counter. Claritin does not work for hives. And zyrtec won't knock you out like benedryl.

[Chirley]

Hi again,

Yes to all three. Rash, itch and fever, but not every time. Sometimes it is just fever, other times just rash and so on. They always put a leukocyte filter on my blood line but I still insist that they run each unit of blood over 4 hours and not faster. When the blood runs faster I get really cold but also get a fever.

I don't know about platelets because I've never had to have them. I will try and remember to ask my brother whether he has a problem with his platelet transfusions. He doesn't like to talk about his illness, so I have to press him to get any information from him. However, he thinks I must be pretty tough. He has only ever had 1 BMB and didn't like it much (?). I have had 5 and don't like it much either but I tell him that it's nothing really "just a little scratch". Yes, sibling rivallary still exists into your 50s.

John Edward Cross Country is coming on and I love to watch it, So talk to you later.

Bye Chirley

[mannythedog]

I have an appt: with the VA in Asheville on Wed. 30th. Will fill you in on what is going on.

Pop had another long night, and feels low. "physically". I am projecting bad blood testes this week. I guess he will need platelets and blood. He hates that due to the itching. He offered to drive me to work on Monday. I go in at 6 a.m. and he needs his sleep, so I wont let him. No one will let me drive yet, but Doc. said I can if I had no other attacks.

Even at 44, Parents.. Sheesh! What are you gonna do.

[mannythedog]

Hello,
I know I am late with Pop's up date this week, but I wanted to get all that facts. It has been an odd one.

Tuesday he went in for the weekly blood test. His platelets were o.k., {23} but his blood count was {7.9} so the lined him up for 2 units the next day. After receiving the blood on Wednesday, the retest showed his blood count did not come up. So, after another retest, it was up to {8.7}, but his platelets dropped to {13}. Thursday, "yesterday" he went in for his usual Chemo, Neuprogin and Procrit shot's, and got a bag of platelets. He really does not feel much better. The last two weeks have been filled with shortness of breath, night sweats, itching, head aches and minor bone pain. "neuprogin?" No one will pull the trigger in an idea of where he is in the journey, partly because he outlasted their predictions by 4 months. Thats Pop, always screwing with time lines.

He feels that he is nearing the final chapter. He told me that, unlike before, he feels it. I don't understand, but I do. Does that make sense? He is happy that he will be here for his latest goal. My wife, Angie, graduates from college next Friday. he really wanted to be there. She is glad.

The Blood drive was yesterday. Wow, what a turn out. Blood Assurance of Chattanooga did a GREAT job. In 7 hours, with 3 blood techs and 4 beds, they did 43 units of blood and 2 platelets. Yes platelets. They had just received a new mini-machine. Pop made an appearance and gave the crew of the "Blood Hound" the blood mobile, a box of chocolates and a card and passed out hugs. He had a rough day to begin with, and still found the strength to do that. The drive ended at 7 p.m. and the last donor left at 7:45. I stuck around to thank the last one and to give the Blood hound crew their needed kudos. Really nice and professional people.

I could go on forever, but I won't. Remember, there is a need to bleed, so do it!

Scott

Son Of Bob

p.s. Oh, I get an MRI at the V.A. next Friday, so I'll Keep you all posted.

[Chirley]

Hi Scott,

I hope your Dad feels better. I am not surprised he feels worn out. Blood test Tuesday, blood transfusion Wednesday and chemo etc Thursday. That would make most people feel a bit weary without even being anaemic.

I wonder what a bit of oxygen would do. I know that sometimes when my Hb is low, I get a persistent headache. Sometimes when I'm admitted for my transfusion, I'm given some oxygen via nasal prongs and I've noticed that it makes my headache go away and I feel a lot better.

It's just a thought. Every little bit helps.

Best of luck and best wishes to your Dad.

Chirley

[mannythedog]

Hello Chirley,

Guess winter is heading your way. Better you than me. Brrrr. Your Way too close to the Antarctic than I would like.

Anyway, as far as putting Pop on oxygen, doctor said it would not help. His cells are an elongated tear drop. This makes oxygen exchange what it is. Like pushing 5 gallons... opp's liters through a one inch hole, just to fill 5 liters again. His cells are like a boat hull. No mater how big, and how fast the motor will go, it will only go as fast as the hull shape will let it. At least, that makes it easier for me to understand.

Chirley, hope you feel better yourself, and did you ask you doctor about less blood at closer intervals? Takes less time at hosp.

Thanks for all your prayers and concern.

Scott

Son Of Bob

[Chirley]

Hi again,

Where I live winter is pretty good. Average daytime Ts are around 22 degrees (70-72) night time it drops to 6-10 (44-50). It is also our dry season, so lovely blue skies. The worst part is the westerly winds.They are cold and dry with lots of static electricity. ZAP ZAP ZAP:eek: Thank goodness we mainly get those winds in August only.

I haven't spoken to my doctor recently. His secretary rang me on Friday and said that I needed to book into hospital for my transfusion on Wednesday instead of the usual Thursday because I needed to have some more tests while I'm there. She also said that when my doctor finished doing his public hospital outpatients clinic he would ring me and fill me in on what he was planning. Don't get me wrong, I like my doctor,BUT, if his secretary doesn't remind him to breathe I think he would forget. Absolutely hopeless at practical things. Just like the absent minded professor. Needless to say, he didn't ring me. Monday is a public holiday here for Labour Day, so I won't talk to him until at least Tuesday. I think I'll wait until I see him face to face on Wednesday to ask about having less blood more often.

Pity the oxygen won't help your Dad, I feel for him. I have been ill once before when I was told that I was very close to death, I don't know whether it was because I was very tired of fighting for every breath or lack of oxygen to my brain or even just a defense mechanism, but I was not at all worried about it. I even started feeling more relaxed because I felt I was being given permission to rest and let myself go. There was no pain, no panic, no regrets, just relief and an inner peace. Then, my elderly parents visited me and I could see the pain on their faces and I felt that I had to try a bit harder for them. I started responding to the treatments. I know now that death is nothing to be afraid of.

I hope you still have a lot of time to enjoy your Dads' company, however, I'm sure when his time comes that he will be ready for the next part of his journey.


Please don't think I'm being intrusive. I just want to reach out and help. Sometimes people who are too close to the situation aren't able to speak openly about their fears and feelings, in case it hurts someone elses' feelings.

I'm not very articulate, I hope you understand what I mean.

Chirley

[mannythedog]

Hello Chirley,

Thanks for the reply. You and I are good. I thank you for your insight and input.

As far as your doctor goes, if it weren't for office staff, and there are some out there that really suck, they would not know which way is up. You figure in any given day, a good one sees one patient every 15 minuets. He relies on his staff to do the stat taking, he then talks w/ you and makes up his prognosis; however, he may ask for more tests if there is still a variable missing. Sound familiar?

Practicing physicians. Thats what they are. Like the old joke, "how do I get to Carnegie Hall? practice, practice, practice".

Chirley, thanks, and keep us informed.

Scott
Son of Bob

[choijk]

Scott,

Great to hear that you're father is doing well, although he hasn't been feeling to well. Sending some love, prayers, and positive thoughts your way.
Great job on the blood drive. It is awesome.
Congrats to your wife. I am happy to hear that your dad will be able to be there to join the celebration. Keep having faith and hope.

[mannythedog]

Well, pop did not need any products this week. His hemo= 9.1, platelets=26 {got those last Thursday, out of normal sync} and white=2.0. He still is tired and winded, and looses energy after climbing a flight of stairs. Internal? has his blood gotten so anemic that this is his plateau until the next drop? Any ideas out there. All the doctors are saying now is "Wow, your still here. Well enjoy the extra time."

Well, I am enjoying the extra time. Any feed back?

Thanks

Scott
Son fo Bob

[mannythedog]

Well, the other shoe dropped. Today pop had a bad nose bleed. He went to the hospital and the had to give him platelets. He has been at 19 before, he was 26 yesterday{see stats last post}, and did not have a bleed issue. because he is, pretty much, on weekly platelets. Is this something to expect more often, or mom should be aware of. No on has any "real" answers.

Any care givers at this stage (please read above two pages to catch up on progress) experienced this. Is the bleeding going to persist? He was at 12 on platelet count once, but it was more thans month ago. I know that a month on a dying leukemia patient is a long time, but I guess I am just hoping to be there, when I really need to be there. Pop and I have said all that need to be said, and he and I are, "Good." If you know what I mean. There are no unanswered questions, and every thing has been put into order.

Feed back from someone that has been here, or am I the first to write the road map of progression here? If so, I do hope it helps others in the future.


I'm always checking.

Thanks

Scott
Son of Bob

[Ruth Cuadra]

Scott,

I think one of the things that is difficult to deal with is that we rely very heavily on blood count reports and set our expectations based on what the counts are from day to day or week to week. In fact, when counts are low like your Dad's platelets, there is almost no difference between a count of 19 and a count of 26. A bleed could happen at any time. Nevertheless, we think that 26 is so much better than 19. I remember feeling much more hopeful when my platelets were 17 instead of 13. If it were important to know exactly how low your Dad's platelets are, the doctor could order them to be counted by hand. Counting by machine, which is what the lab will do unless specifically instructed to count by hand, is not very precise especially when counts are low.

The platelet level at which one will have bleeding problems varies from person to person and even for the same person depending on all the vagaries of their condition. This partly explains why your Dad may not have had any bleeding problems with a count of 12 but now does at 19 or at even at 26.

You are in the realm where medicine is much more an art than a science and there are no real or absolute answers. I hope you and your family continue to enjoy whatever time you can with your Dad.

Regards,
Ruth

[Marlene]

Hi Scott,

We found that John did better with his own platelets than with transfused platelets. 8K of his own platelets were as effective as 15 -20 of transfused platelets. John never got severe nose bleeds. His gums and nose would bleed off but not for a very long time. One time he did have to get platelets because his gums kept bleeding and it help. But then, John was no longer on any chemo. Chemo can effect the "health" of veins making them more fragile.

It is really so individualized and hard to figure out what's really going on.

Marlene

[mannythedog]

Hello,
GOOD NEWS, Pop made another goal. He got to see Angie Graduate last Friday from college. He was really proud, but tired. After she walked, I escorted him back to the car. It was about 80 degrees, and he was cold and covered in a jacket.

Now the other news...Tests were not real good. Hemo at 8.2, Plates at 26 and white at 2.2; something has got the whites up in arms, along with pick-me-up help from the neuprogin{normally .9 to 1.1}.

Pop will have a rough weekend this week. Doctor set the orders at 8.0 and 20 or below. He will be there by Thursday; however they want him to wait till next week. His breathing is becoming labored.

He walked down stairs last night and talked w/ me while I serviced his tractor. He feels so weak. His blood just is not doing the job. {see prev posts} I feel so helpless. He tells mom he hangs in there for me. I don't want to be the reason for him being uncomfortable. We talked about that last night.

I will spend as much time as I can with Pop. I am so glad I am here to be with him. It is tough to see such an active man waste away, but if I had the choice to make, I would choose to be here with him.

I love my dad.

Scott
SON OF BOB

[mannythedog]

Hello again,

Pop went in for his Wednesday neuprogin. They saw the issue he had with breathing, and he is scheduled for 2 units of blood today, along with his 2nd neuprogin, chemo and Procrit. Will be a rough day. He is glad for it.

I was finishing his service on his tractor last night, and he has hopes of mowing on Friday. I am not going to argue any more. I told him I was just glad that the mower attachment was on the front, so if he fell off he would not get hit. He fount it funny that I thought he would fall off. Go figure.

He is figuring that he is building fluid around his heart. See doc. next week. I figured if the 2 units don't help, he is probably right.

I will keep you all posted. I will also attempt to jump on the tractor first. If you met my pop, you would know that that is not going to happen.

Scott
Son Of Bob

[Chirley]

Hi,

Must be fathers. !! My Dad is 80 and insists on climbing up a ladder to clean his gutters on a two storey house. He also rides his pushbike to my house to mow my lawn. He is currently painting the outside of his house. He has finally admitted that he can't shovel concrete any more. He says he gets a bit puffed. !!

This is a man who has just refused to have heart surgery to replace his mitral valve. He says that he wouldn't be allowed to drive for 6 weeks. He doesn't like that idea at all.

Chirley

By the way, I LOVE him to bits. (stubborn old bugger)

[mannythedog]

Chirley,

Thanks for the reply. Got me giggling. I guess you win the " I got the crustiest ol' dad award". I thought for sure my dad was crustier, but the concrete deal, that pushed you over the top.

Wear this award PROUDLY!

Pop went in for his 2 units of blood yesterday. His count only went up to 8.2. His breathing is not as labored; however, you can see him getting winded still after the climb on the stairs. Mom told me yesterday morning that she had to help him out of the shower on Wednesday night he was so bad. She was going to find a shower chair and things. I have a customer that works in the home health field, and she is loaning me a shower chair and a wheel chair, {if he wants to use it it is there} until he stops treatments. Then Medicare will give him his own stuff, and we can return the loaners. He has finally realized he needs more help. He knew last nights hemo count was bad. It usually goes to 9.2 to 9.7. My time with him is short.

Hope your feeling well, as my father says, "Your only as old as who your feeling, I guess I'm 73." By the way, he's talking about my mom, or the old guy next door......LOL

Have a good day.

Scott
Son Of Bob

[Flyboy]

I am one of the lucky ones who has met Scotts Dad......After reading a post on Saturday my girlfriend and I went to see Bob and Scott......I enjoyed the time I spent with Bob.....he still had those bright eyes and laugh....what a spirt this man has! I only hope I will be as strong as he when its my turn...I have learned so much about life from this man and will miss him when he is no longer with us......We had a couple of cherished hours of just talking about this and that moments I will always remember and cherish........it was a short stay had to get back to Cincinnati...Mary and Krysten...the girlfriends daughter or I should say my daughter....the child I never had came with me for support. It was hard leaving knowing this may have been the last time I got to see or speak with Bob....on the way back to Cincinnati Krysten saw the tears...something she had never seen in her own dad told her mom she might want to drive for a while so I could rest my eyes...kids even at 15 she shows such signs of maturity. I hope to get back to see Bob and Scott and Angie soon along with Bobs wife..........for those who have never met or gotten to know this family .....all I can say is that I have been lucky to have known them for several years now.....they have always treated me like family ....maybe thats why this is hard on me.....I feel as if I am losing family....this is just my way of letting you all know what wonderful people these guys are........Scott was right loved by many ....well I know of one ...me.
Del

[Chirley]

It is really refreshing to see that respect for family and/or family values is still important in this day and age, there seems to be so much ME,ME,ME. This forum feels warm and welcoming because of it. Thank you.

Chirley

[mannythedog]

Thanks Dell, We all love you too.

Scott
Son Of Bob

[mannythedog]

Hello again,

As you all know, our, close family, friend came from Cincinnati for a day trip to see my father on Sunday. It was a 820 mile round trip, to see pop. Dell is good people.

Pop's results are in. Oddly enough, his hemo climbed to 9.2 and white to 2.7. His platelets are 7.8 so he gets some tomorrow. He is having increased pressure under his rib cage, and feels like he is starving for oxygen. Kind of "gulp breathing". The nurses said that his heart sounded strong and his lungs clear.

He has not has an internal look, cat scan or MRI, to see whats up, and does not see the need. He also mentioned that when they took his blood today, it was a deep purple, not a bright red. I know that red is good oxygen exchange, is purple the opposite? ie: lousy exchange. {feed back please} I have read that lack of oxygen will cause some organ failure, but he still uses that bathroom regularly and still has a decent appetite. He is not sleeping at night either because of the cold sweats. My mother is washing sheets daily.

I have asked those that know pop, and family to come and see him now, while he can still hold a conversation. After a visit with my niece, and then Dell, maybe 4 hours of visiting with an hour break in between, he was done. With Dell, I noticed he was closing his eyes and slurring his speech at times, so I called it short. He stated he could use a nap.

Thanks for the response, and to those that know dad that visit this site once a week for up-dates, thank you again.

Scott
Son of Bob

[Neil Cuadra]

He also mentioned that when they took his blood today, it was a deep purple, not a bright red. I know that red is good oxygen exchange, is purple the opposite? ie: lousy exchange. {feed back please}
Scott,

Fully oxygenated blood is bright red. Oxygen-depleted blood is dark red, maybe purplish. So normally a blood sample taken from an artery will be bright red.

Blood from a vein would be the darker red, and the reason blood always looks bright red when we bleed, even though it usually comes from a vein, is that it mixes with oxygen as soon as it's exposed to air. By the way, "blue blood" seen in veins under the skin is a result of how light is absorbed/reflected by skin, so that's not relevant to oxygen level.

There's an easier way to get the facts than by observing the color yourself: your father's HGB (hemoglobin) count. Hemoglobin molecules are the blood's oxygen carriers and low oxygen (anemia) is indicated by a low HGB count.

[Flyboy]

Scott,

I spoke with some of the people at Hoxworth here in Cincinnati about the color of blood you spoke of......lack of 02 and also the body using it and is disposing it as waste will cause this condition. Anything you need to know post it I will get in touch with experts daily to find out the answer....not that I'm not in many Hospitals and Hoxworth daily now....

Oh I sent you an email about the weekend...if you don't have any guest coming down Mary and I would like to try and come down for sat-mon to help you guys catch up with the work around the place..let me know asap...

You guys are all loved by many .....you know I will come there at a moments notice for any reason Scott.....

Del

ps...the movie will arrive Friday via mail for Bob..I hope he enjoys it!

[Marlene]

Hi Bob,

Just in case your Dad wants to address the lung issue I will share with you John's experience with what appears to be a very similar symptom. For a time, John felt like he had wire band going around his chest impacting his breathing. We were told that his lungs were clear also. Come to find out he had a build up of fluid around his lungs call plueral effusions. You can try a diuretic to get rid of excess fluid but in John's case, they ended up draining them which gave great relief. They xray the lungs before and after the procedure. He tolerated the procedure very well. They basically insert a needle into the area and drain it. They took off 1.5 liters from one lung and then another .5 liter from the other. He had to have this done twice. You can see how that much fluid will get in the way. I think it would be a good idea to explore this from a "comfort" aspect.

Marlene

[mannythedog]

Hi Marlene,

Thank you for the input. I have informed my dad and he will ask tomorrow.
I will let you know the out come. Oh, did your husband also have the blood issue, or should I say the oxygen exchange issue? Just wondering if it could be connected.

Thanks again.

Scott

[Marlene]

Hi Bob,

John was on oxygen at the time but I think his blood was darker also. I know he would complain about the feeling of the band around his lungs and I even noticed that his breathing seemed off when he was sleeping.

Marlene

[mannythedog]

Hey Marlene,

My dad is Bob, I am scott, but I am Robert Scott, so..., I guess I could be Bob; however, to lessen confusion, the called me Scott, after the milk man.

O.K. Now we got that cleared up.... I wanted thank you for your input. I told Pop, and he will see the doctor next week for a check up and mention it.

On a different note, Update on Pop. Today he got his Thursday chemo, procrit and 2nd weekly neuprogin shot. He came home and he and mom felt crappy. They took their temps, and have low grade fevers. Pop has that "Dynamite" stuff. He is taking it, but with his blood being less than fair, I think he is in for a rough time. His whites on Tuesday were higher than they have been since this started, 2.7, I had asked him then if he was feeling sick. I guess they were ready for a fight before he knew it... that is if I am assuming correctly. Don't whites climb if there is an infection?

Thanks for letting me ramble on folks.

I like your in-put. Thanks again.

Scott,

Son of Bob

[Marlene]

Sorry about that....I knew that. My thinking and typing are not always in sync. I need to slow down at times.

Anyways....I've seen John's lymphocytes go up somewhat with a viral infection. But for the most part, they are pretty stable. Others have reported spikes in their lymphs with virals illnesses. His platelets and red cells take a hit especially if there's a fever. Fevers can chew through platelets.

Marlene

[mannythedog]

Well, blood tests came in yesterday. I figured they would be low because it we had a past, beautiful weekend, and pop didn't have the strength to ride his tractor and mow. Last weekend, he rode for an hour, and last Wednesday tried to scrape the driveway, but gave up after 15 minutes. He is loosing his strength more rapidly.

His blood testes were Hemo' 7.7; platelets' 20; hemocrite' 22; red' 2.5; white' 2.5, whites are still up. Dr. stated that he is not making any more platelets, and hos bone marrow is pretty much done. He needs the procrite to help the red blood cell's, but he does not need the chemo anymore; however, medicare will not cover the Procrite unless he is on the chemo. What do you do in that case. Keep taking the chemo. The Procrite is over $1,000 per treatment, and he gets that weekly.

Pop has discussed stopping several times, but this past weekend, he was pretty much agrivated with the fact he could not take car of what is his anymore. My wife, oldest sister and my 21 year old son visiting from Florida this week, took care of it. I was so glad it was a 3 day weekend. Needed the extra day of sunshine.

I guess at this point we all are going through the motions. Tuesday tests, wednesday first Neuprogen, blood, platelets, or both, thursday chemo, Procrite and the other Neuprogen shot. Thursday night, Friday and most of Saturday he is worn down from wednesday and thursday, and by sunday, the blood he got on wednesday is tired again. He is still talking and enjoying his time with mom and family, but that is becomming not enough for him anymore. I can't begin to imangine what he is feeling.

I guess someday our kids will take care of us. We may not like it, but are glad they are there. This much I did figure out. The legicy we leave behind is not a cure, money, land or an invention, it is our children. Pop was there for me when I was growing up. He worked hard and long so he didn't make games or school functions, but as far as family, work, religion and play time went, he was there. We had, up until last year, what I would call a "work relationship". He taught me how to work with my hands and not be asahmed of it.

I love my dad.

Scott
Son of Bob

[Flyboy]

Scott you have made your family and me proud.....you have shown us all what a son should be.....

We love ya and your family

Del

I know your dad is very proud of you.

[Chirley]

Hi Scott,

I want to reach out and ease your pain, but unfortunately, it doesn't work that way. All I can do is offer words of support.

Best wishes to every one.

Chirley

[mannythedog]

Hello,
Its Tuesday again, and the news is about the same, with exception that he gets no blood products this week, so far. What do I mean... well, his platelets are 1 point from needing them; however, his throat is weeping blood, and has increased as his platelet count drops. He is also bruising worse.

Yesterday, he went to the eye doctor to get his eye pressure checked. He has had the onset of glaucoma prior to this, and has been taking drops. His eyes have been hurting him, and has not bothered to see his ophthalmologist {for obvious reasons} well, the local optometrist looked at him, and said his pressures were good, due to the weak blood, but the oxygen issue is causing discomfort. Makes sense. Oxygen deprivation will cause organ decay. Anyway, I got off on a tangent, my wife... and everyone else in the world, gets on me, but I am laying ground work here. Anyway, after that he, mom and my daughter Belle {6}, who was off school yesterday and today, went to get some ice cream. He got a sugar cone, and severely bruised his mouth and gums. It looks like he lost a fight. Over the weekend, he bumped into the counter and bleed like a stick pig for hours, and has a 6 inch bruise to prove it.

He is bruising so much easier these past couple of weeks; furthermore, Belle went with them to get his blood test today, she loves to see the lab techs, and really thinks it is interesting. She asked me tonight why Pop's blood was blue, and hers was red when she had her test. She understands that pop is sick, and his blood is tired, so I did not have to go in too deep.

I know many of you reading this are wondering why Belle is going places with them. Pop loves her so much, and wants to spend as much time with her as he can, so Angie and I allow it. She is going to have a tough time when he leaves us, but the memories she is going to have of him will be worth it. He now spends much of his time in his chair and on the couch, or sleeping in bed, but he is good for a puzzle, some cartoon discussion and a bout of doll's. Us Schultze guy's aren't afraid to do an occasional tea party from time to time either.

On a lighter note. Since Angie graduated, she did get a job at Blairsville General as a medical coder. {one county over, and just over the state line} She is very excited. Started Monday, and is very happy. The business office there is very professional. Pop is so proud of her and keeps asking for up-dates . They never consider her as their daughter in law, just another Schultze girl.

Thanks for letting me jabber. It feels good to know people read my ramblings.

Prayers to all of you who are sick, and the care givers standing by you.

Scott

SON OF BOB

[Joan]

Scott,
thanks for your ramblings and sharing about you dad's journey through this disease. I think it is great your daughter goes with him to doctor. Sure she will miss him when he dies but as you say she will have good memories.

I especially appreciate your sharing what you dad is going through physically as it appears as though he might be reaching the end of life. That is something we all wonder about and your openness if helpful.

Thank you for your sharing.

Joan

[choijk]

Scott,

Hang in there. I too appreciate your posts. You are a wonderful advocate for your father and most importantly, a loving devoting son. I will keep your father in my prayers.

[mannythedog]

Saturday was nice.

The sun was out early, so I completed my errands prior to a Saturday morning pancake breakfast date at Mom and Pops. My son and I went up and had a good time with Pop. After breakfast I moved needed tools to moms garden hydrant that had a leak, and got the tractor set up for Pop. He came out and supervised. He held the hydrant steady for me while I set the pipe ,set the stones and back filled the hole.

He pushed me to install the sharpened blades on his mower and he rode the tractor and mowed for about 20 minutes. I removed him from the tractor because he was wiped out. It surprised me that he felt as bad as he did, and still put up a fight when I asked him to let me finish.

He slept the rest of the weekend and most of Monday, except for pitting cherries that Angie and my mom picked.

Today he got his blood test again, we knew he would be low due to how close to needing blood and platelets he was last week. His Hemoglobin is 7.5 and Platelets are 16. He will spend the day at the hospital tomorrow, and then get his shots. His chemo has been hitting him hard for the last few treatments.

I enjoyed our work time on Saturday. We have had that kind of relationship for years. I was glad we had another chance to get dirty. We didn't talk much, because, well we know how we feel. Its all been said. He is on time that he wasn't supposed to have, so we have been enjoying it.

Expecting family and friends over the weekend, pop wants a big dinner on Saturday night. Guess we'll give it to him.

Thanks to all of you sending prayers, and to those of you that stopped by and picked up a weed eater.

Scott

Son of Bob

[mannythedog]

I would have to say I have gotten much more time with pop than the doctors first stated. Thanks to modern medicine, he has been hanging in there; however, his blood is not bouncing back anymore.

Yesterdays blood test had him at one point from needing blood and platelets. They gave him the option of getting it, but he said he would wait and see. Thursday he goes in for his "shot day" and they will re-due the blood test to see where he is. He was pretty bad this past week. He had wanted to pick cherries off his tree Saturday, but my wife ran him back to the house. He got about 15 minutes in, and we finished for him. We had friends from Cincinnati come down, and they were a big help.

Belle, my 6 1/2 year old has been staying with pop and mom since school let out. She has been going to the hospital with him, except for blood days, too long. She told me last night she wanted to come to work with me on chemo day. Pop had a bad reaction last couple of weeks, and it scared her. She had never seen a grown up get sick before, and since she realizes what is going to happen to him, it hits closer to home for her now. She wants to be there every other day to help him, but she said, "Pop need rest on Thursdays, so I'll come to work with you."

He pretty much is on week to week now, and I guess, like I stated before, time will tell. He was in such good shape before he got sick, and has had a pretty good appetite through it all, I have to believe that that has a lot to do with it.

God bless all those who are sick, and the care givers that love you.

Scott
Son Of Bob

[mannythedog]

O.k.

The long and short of it is I have no idea whats happening. As I stated on my last post, Pop was failing fast in the blood department. he needed to have blood on Friday. He was in the high 6's on hemoglobin and 13 on platelets. His whites were 33.5 {33,500} a tad high. All weekend, tightness in his chest, lethargic, sleepy, hard to get oxygen and worn out after a walk to the bathroom. The doctor took him off the neuprogin thinking his body was rejecting it, but he still had last weeks shot.

Today he had his Tuesday blood test. White was 4.8, Hemo was 10.1 and his platelets were at 37. He said he feels about the same; however, can concentrate better than Sunday. Is this the bulb getting brighter before it goes out issue? Last week the doctor was talking hospice, now i wonder what he will say on the Thursday appt. I am very confused, and my poor mother is on one emotional roller coaster. Any clues out there, I would love to hear some input.

I will keep updating as info comes in.

Scott

Son Of Bob

[Marlene]

I remember that they didn't want John on Neupogen any longer than needed. Some feel that it can take away from the other blood lines production. In other words, the stem cells differentiate down their individual pathways depending on the body's needs and the growth factors. So it is possible, that Neupogen was taking more of its share of stem cells. This is a long shot though. Then you also have those who think being on Neupogen and Procrit has a synergistic effect in a good way. Bottom line is that everyone is different will respond differently. I understand the rollercoaster...it is a rough ride. You learn to take it a day at a time and then sometimes, hour by hour.

You can see the pathways at this link.
http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/B/Blood.html

[Jbsx19]

Hi Scott,
I have been reading your posts and must say that I am truly touched by your sense of values and true dedication to your family and your Dad's health and well being.
Although I am far from an expert, I have had three occasions to use Hospice, as both my mother, mother in law and most recently, my 27yoa neice in April of a Brain Tumor.
They are truly wonderful and dedicated people, who make "the end of life" the most caring and peaceful experience.
Keep in mind, that when you register under Hospice, the patients care becomes the mindset of just that "End of Life" as opposed to "Prolonging Life". Your Dad's care would be turned over to the hospice doctors and no longer be seen by his current ones. All medical decisions will be made by the hospice drs and not your physician. Those decisions are made to make the patient "comfortable" not extend life. That may mean for example:no more transfusions, I don't know for sure, as each hospice is run as it's own entity and has its own rules.You may at some point withdraw from hospice to continue care, but that may pose insurance issues, as well.
All I'm saying , is tread carefully as to not get into a situation that you are not comfortable with. The "End of life" decision is not an easy one to make under any circumstance, that's for sure, but just be sure of the decision and of course, ultimately, it's your Dad's choice.
Prayers with you,

Judi

[mannythedog]

Hello Judi,

I understand the Hospice deal, I also am aware that if pop makes this decision, he will no longer me covered by his secondary or Medicare for any further treatments. I guess that is what is weighing on his mind. He has been telling everyone. "my family" that he has been continuing treatments for me. We had a long talk about a month ago and I told him he needed to stick with his personal deal, "Quality over Quantity". He has always said when the bad days out number the good, than the deal is over. All has been said and understood. Right now, he has a problem leaving my mom. They have been connected at the hip since 1953. I mean really connected. Owned business together and worked together. The only time they were ever part was when he or she was in the hospital.

The decision, when it is made, will be honored by all, but you know, He really is special and will be so missed.

Thanks again, and if you want to see pic's of pop, I have a little slide show of the family. Anyone one is more than welcome to look.
http://www.myspace.com/schultze1963

Scott

Son of Bob

[mannythedog]

The Dr. put Pop back on the neuprogin and he received his shot yesterday. He was feeling o.k. on Tuesday night, and Wednesday morning. Last night when I went to see him, he was wiped out. He had difficulty breathing and was in bed. I put in a call to the oncologist, but he has not returned my call yet.

I know I am not a doctor; however my life is diagnosing mechanical and electrical issues all day long, and we are, somewhat machines, so I tend to self diagnose at times. I feel the neuprogin is boosting the whites so high, they are choking his reds{short voltage to ground}. His blood viscosity and polymers are already low {oil pressure}; furthermore, it is a replay of last week, but worse. The rest of his blood tests had also come back. His iron levels are way high. He is starting to reject the blood. I figured it would have happened sooner since he used to give blood to keep the iron down.

I guess I am trying to reason what can not be helped. I am a son.

Thanks for listening, and I really appreciate the feed back.

Thanks again.

Scott
Son Of Bob

[mannythedog]

Hello all,

I held back this weeks due to pops visit to the Oncologist was Thursday, (and the site would not let me post) and I wanted info. Well, he needed to get blood instead, so that visit has been pushed back to the 15th of July. His hemo was 9.2 on Tuesday and his platelets were 14, so yesterday, all he needed was plates. Well, after he got his fill, the do a retest, and his hemoglobin was down to 7.6. Almost 2 points in a day. So he is getting 2 units of blood today.

We all know pop is not pop anymore. A flash to last year, he was active and working. We see that, but worse, so does he. He has become grumpy "Belle's term", and crabby. I understand why he is that way. His good days were diving and sailing his boat when he lived in Florida, working his property, doing projects, making extra Cash sweeping chimneys and installing fire place inserts "heavy", riding the tractor and mowing, now it is a few hours of T.V. He always said he did not want to become his father, so I would guess that is why he is the way he is. I, personally, have not had a problem, and he has been great to the kids, but mom gets the worst of it. I offered her a day and night off, and I would stay w/ pop and make his meals some weekend. She could drive to my sister Sue's w/ Angie and kids, but she said no. She wants to be w/ pop. She is wore out and could use a rest.

I guess what I am saying is he is now on weekly blood and platelets. The oncologist wants to put him on hospice, {to those that don't know yet} this means he gets no more treatments. The way he body has been acting, that gives him less than a month. Dr, Moreland {his family doc.}, on the other hand, wants him to keep going, "Bob your doing great" he says. So pop keeps going, being miserable. The chemo is giving him the dry heaves, and he says it feels like something tore on his left side. He can't even make it out side for more than a few minutes anymore.

I don't want to sound like a bad son, but he was so worried about quality of life verses quantity. His quality is gone. What do we do, just wait and watch him not be who he was. His choice, I know. Not Pop though, he never just went through the motions, he was a project starter, hard worker and adventurer all his life. Now, barley an observer.

I will wait until July 15 to make another post. See what the Oncologist has to say.

Scott

Son Of Bob

[mannythedog]

I know I was supposed to write on the 15th, but there have been developments. I don't want to jump the gun yet so I will tell you what I have to date.

The 15th we went to see the Oncologist and he was amazed to see pop. Pop had received blood on Friday, so he was still able to putter in under his own power. The Dr. checked him over and we discussed a few things. First, his body is eating {rejecting} the donated red blood cells and the platelets. He is on weeklies now with numbers that would have gotten him a month to 3 weeks. For example, his platelets are in the high 50's to low 60's after a transfusion, and the following week they are at or near single digits; furthermore, the blood transplants push him up to the 10's and the following week he will be in the 7's. We also talked about his pains and his increased liver numbers. The Dr. ordered an Ultra Sound, and he received that yesterday with his platelets. The Ultra Sound, right off, showed an enlarged spleen. The liver, the tech did not voice an opinion, per my mother.

Pop is going for another chemo today, but no more Procrit or neuprogin. The Dr. pulled him off of that Tuesday. Pop has become, I believe, the "experiment" for the oncologist. Pop is O.K. with that. Makes him feel like he is producing, and or, participating. It also makes him feel kind of special.

Their 55th wedding anniversary is August the 1st. Another goal he has made. There is no doubt he will make it till then; however, he is down to weekly blood and platelets. His deal w/ himself was to stop at this point. That is unless he want to see his 77th birthday, which is on the 25th of August. With Pop... who knows. He is, as the Dr. stated, very unpredictable.

Will leave note with rest of diagnosis later.

Scott,
Son of Bob

[Neil Cuadra]

Their 55th wedding anniversary is August the 1st. Another goal he has made. There is no doubt he will make it till then; however, he is down to weekly blood and platelets. His deal w/ himself was to stop at this point. That is unless he want to see his 77th birthday, which is on the 25th of August. With Pop... who knows. He is, as the Dr. stated, very unpredictable.
Scott,

We often give each other the advice to face life's toughest challenges one day at a time. I'm glad that you and your dad can recognize and appreciate the goals that anniversaries and birthdays give us. They let us look forward to the events we share with our families and reflect on what we've accomplished.

[Alison]

Hi Scott

Talking of how important goals are! We had the shock of our lives last week when we were suddenly given the news that my Dad's MDS had progressed to AML. Within a day he was admitted to hospital for six months of chemo (Cytarabine & Daunarubicin - my spelling may be out on this one!). He is in isolation. Apparently its going to be one week chemo, three weeks recovery and then one week at home. The Social Worker called today (what a relief) to help him to set himself a few goals. The next six months are going to be tough! One consolation is that he has been sheltered from germs and the rashes/bruises/scabs on his skin (hands and feet) seems to be looking a whole lot better. Being such a lively person has taken its toll on his outlook on life. This disease is really draining but we still remain hopeful that something will turn for the positive. My Mom has had to move from our home town to be close to the hospital (approximately 3 hours away by car). He has also had to be medically boarded from work.

Good luck
Alison

[Zoe's Life]

I am glad the social worker is helping with goals. Sounds like your dad must go through the hard process of coming up with some different goals for now. But having goals is a god-send. This social worker sounds like a gem. I am glad he/she is around for your parents through this challeging time.

Zoe

[mannythedog]

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

[mannythedog]

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

[mannythedog]

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?

[mannythedog]

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

[Zoe's Life]

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

[mannythedog]

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

[Neil Cuadra]

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?

[mannythedog]

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

[Debra]

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.

[mannythedog]

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

[Debra]

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!

[mannythedog]

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

[mannythedog]

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

[mannythedog]

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

[Marlene]

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

[Debra]

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

[mannythedog]

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

[mannythedog]

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

[Wayne O'Shana]

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...

[mannythedog]

Thanks,
I am looking into this, I will research it.

[mannythedog]

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

[Ruth Cuadra]

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 (http://www.nhpco.org/templates/1/homepage.cfm).

Regards,
Ruth

[mannythedog]

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

[Dick S]

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.;)

[mannythedog]

????????????????,
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