Dad has hypo-cellular acute bone marrow Leukemia

[Neil Cuadra]

Originally Posted by mannythedog

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.ult...s/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]

Originally Posted by mannythedog

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