Dad has hypo-cellular acute bone marrow Leukemia

[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.

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 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