Merlin1047 updates

[Shattered]

I'm not even going to touch that line!!!!

I wouldn't either, but I couldn't resist. You started it. :tng:

 

[Merlin1047]

Reached a milestone today. The vestiges of remaining hair were looking pitiful, so I shaved it all off.

I look like a freakin egg with a neck!

 

[Annie]

Reached a milestone today. The vestiges of remaining hair were looking pitiful, so I shaved it all off.

I look like a freakin egg with a neck!

Better than the lolli comparison!

I bet you are cute!

 

[Shattered]

Reached a milestone today. The vestiges of remaining hair were looking pitiful, so I shaved it all off.

I look like a freakin egg with a neck!

Put the shades on - they'll make you look intimidating.

 

[Merlin1047]

Today's blood test showed everything either where it needed to be or close and moving in the right direction.

Platelet count at 129k (140k low normal)
White cell count at 7.5 (4.5 low normal)
Red cell 8.6 - still low (12.0 low normal), but it is higher than the count immediately after I received two units of blood this past Friday. Which means that I'm finally manufacturing my own again.

Talked to doc, he was happy. Said we were ready for round two of chemo. I asked him when he wanted to start that and he tap-danced a bit and hinted that we may want to start next week. I inquired why the wait. Turned out he was just trying to give me a break and let me get out in public without a mask for a few days. I told him that I was ready to get with round two as soon as he thought it was advisable. So we're going back in this coming Wednesday. Round one didn't kill all of the blast cells, so I figure that every day I delay, we're giving the little buggers more time to regenerate. No point in that.

As physically draining as the chemo is, I don't really dread having to do it. The thing that I hate most about going back into the hospital is that once again I will have to tolerate that swill that passes for food in that place.

 

[dilloduck]

Today's blood test showed everything either where it needed to be or close and moving in the right direction.

Platelet count at 129k (140k low normal)
White cell count at 7.5 (4.5 low normal)
Red cell 8.6 - still low (12.0 low normal), but it is higher than the count immediately after I received two units of blood this past Friday. Which means that I'm finally manufacturing my own again.

Talked to doc, he was happy. Said we were ready for round two of chemo. I asked him when he wanted to start that and he tap-danced a bit and hinted that we may want to start next week. I inquired why the wait. Turned out he was just trying to give me a break and let me get out in public without a mask for a few days. I told him that I was ready to get with round two as soon as he thought it was advisable. So we're going back in this coming Wednesday. Round one didn't kill all of the blast cells, so I figure that every day I delay, we're giving the little buggers more time to regenerate. No point in that.

As physically draining as the chemo is, I don't really dread having to do it. The thing that I hate most about going back into the hospital is that once again I will have to tolerate that swill that passes for food in that place.

Sounding good ! I'm with you--get that chemo over as quickly as possible--we'll see what we can do in the food smuggling department !!!

 

[Annie]

Today's blood test showed everything either where it needed to be or close and moving in the right direction.

Platelet count at 129k (140k low normal)
White cell count at 7.5 (4.5 low normal)
Red cell 8.6 - still low (12.0 low normal), but it is higher than the count immediately after I received two units of blood this past Friday. Which means that I'm finally manufacturing my own again.

Talked to doc, he was happy. Said we were ready for round two of chemo. I asked him when he wanted to start that and he tap-danced a bit and hinted that we may want to start next week. I inquired why the wait. Turned out he was just trying to give me a break and let me get out in public without a mask for a few days. I told him that I was ready to get with round two as soon as he thought it was advisable. So we're going back in this coming Wednesday. Round one didn't kill all of the blast cells, so I figure that every day I delay, we're giving the little buggers more time to regenerate. No point in that.

As physically draining as the chemo is, I don't really dread having to do it. The thing that I hate most about going back into the hospital is that once again I will have to tolerate that swill that passes for food in that place.

:clap1: Excellent dude! You're still in my prayers, but sounds like you are on the right track!

 

[Mr. P]

.... The thing that I hate most about going back into the hospital is that once again I will have to tolerate that swill that passes for food in that place.

Well gee, looks like I may be headin to LA to do a little cookin...

Seriously....good luck and give the nurses hell, they like that.

 

[5stringJeff]

Give 'em hell! (the cancer cells, not the doctors)

 

[no1tovote4]

If you can; tell us just before you go, studies show that prayers/meditation have greater effect if more people are working on it at the same time. (The two or more thing has a basis in science as well). This will give us a chance to get a "group" together, to concentrate our effort during the same timeframe.

Good luck, you are in our family's thoughts during our meditation...

 

[Merlin1047]

When all this is over and I've regained my strength, I'm going to kick my doctor's ass.

The rotten wanker led me to believe that the even numbered chemo sessions would be less strenuous than the odd. Well, they ARE shorter - by one day and they DO administer fewer drugs. Here's the catch - the reason for all that is the potency and effect of the drugs that are administered is such that they can't administer more without killing you. I've been pretty weak and exhausted for the last several days. Blood pressure has been all over the place from way too high to so low that I can't stand up very long.

So much for the bitching. The good news is that all the bloodwork numbers are stronger than after the end of the first round of chemo. The main item of news is that the blast cells in the blood have been reduced to zero. We were getting worried about that. That doesn't mean that the cancerous cells residing in the bone marrow are gone, but it's a step. I also don't know if there is some expectancy of blast cell regeneration or not.

But for right now, there's some good news and I'm not going to look that gift horse in the mouth.

 

[Merlin1047]

If you can; tell us just before you go, studies show that prayers/meditation have greater effect if more people are working on it at the same time. (The two or more thing has a basis in science as well). This will give us a chance to get a "group" together, to concentrate our effort during the same timeframe.

Good luck, you are in our family's thoughts during our meditation...

I don't know about studies, things like this are hard to quantify. But I'm amazed at the number of people who have been praying for us. Personally, I believe that faith and prayer works, but I can't prove it. Every time I've asked God for healing or for strength, somehow it seems to be there when I need it.

 

[Annie]

I don't know about studies, things like this are hard to quantify. But I'm amazed at the number of people who have been praying for us. Personally, I believe that faith and prayer works, but I can't prove it. Every time I've asked God for healing or for strength, somehow it seems to be there when I need it.

Merlin1047 I'm so glad things are moving in the right direction so far! Keep it up. I believe that there are numerous studies that quantify that people that pray, tend to have a much higher positive aspect to life. Those that have a more positive outlook have been shown to respond to medical regimes much better. It's all connected.

 

[manu1959]

When all this is over and I've regained my strength, I'm going to kick my doctor's ass.

The rotten wanker led me to believe that the even numbered chemo sessions would be less strenuous than the odd. Well, they ARE shorter - by one day and they DO administer fewer drugs. Here's the catch - the reason for all that is the potency and effect of the drugs that are administered is such that they can't administer more without killing you. I've been pretty weak and exhausted for the last several days. Blood pressure has been all over the place from way too high to so low that I can't stand up very long.

So much for the bitching. The good news is that all the bloodwork numbers are stronger than after the end of the first round of chemo. The main item of news is that the blast cells in the blood have been reduced to zero. We were getting worried about that. That doesn't mean that the cancerous cells residing in the bone marrow are gone, but it's a step. I also don't know if there is some expectancy of blast cell regeneration or not.

But for right now, there's some good news and I'm not going to look that gift horse in the mouth.

keep fighting the good fight............we all have faith in you

 

[no1tovote4]

I don't know about studies, things like this are hard to quantify. But I'm amazed at the number of people who have been praying for us. Personally, I believe that faith and prayer works, but I can't prove it. Every time I've asked God for healing or for strength, somehow it seems to be there when I need it.

It is hard to quantify the effectiveness of prayer if you only study one side, if all you studied were the people praying you probably would have a higher instance of bruised knees in those that pray.

There have been studies that show that those that believe and are prayed over during illness have a higher rate of recovery. They can quantify the result, by statistical data, if not the prayer. Most of those doing the studies believe it is psychosomatic, many others have a much more solid belief as to why and it has nothing to do with soft sciences....

Either way, my family will continue in the belief that what we do can help you and in the wish that you get well quickly.

 

[fuzzykitten99]

Is Merlin ok? I haven't seen him post in the last couple days...

 

[no1tovote4]

Is Merlin ok? I haven't seen him post in the last couple days...

I think he is in treatment this week, he'll update us when he gets back...

 

[fuzzykitten99]

I think he is in treatment this week, he'll update us when he gets back...

ok, i was getting worried.

 

[Merlin1047]

Had to go back into the hospital between scheduled chemo treatments due to a fever I had developed. What followed had to be the most blatant piece of medical blundering that I've ever experienced.


I came in with a temp of 102 which promptly climbed to 104. The folks on the oncology floor managed to get it down to 103, but decided that I needed to be in ICU. That's where the nightmare started. The ICU was a classic example of how bureacracy can kill you. They have a patient treatment protocol and they are apparently unable to alter that to meet the needs of a specific patient. Everyone who rolls through the door gets the same cookbook approach. First they gave me platelets - even though my temp was still 103 and there was no pressing reason for platelets. They neglected to check my chart so they did not preceede the platelets with steroids. As a result, I had a reaction and turned into one giant welt.

Next they wanted to infuse two units of blood. Now I had been told by numerous medical folks at two different hospitals that you don't do red blood with a temperature in excess of 101. I pointed this out to these two boneheads who were treating me, but they insisted. Finally I flatly told them that they WOULD NOT give me blood until they had my temp under control. They still insisted, claiming that I was risking my life by refusing. I said "Look at me. Do you see me bleeding anywhere? So what's the rush?" I had my way.

Next they stuck me on a cooling blanket. This is a plastic device which has a grid through which a refrigerant is pumped by a machine which looks suspiciously like a small central air conditioner. They left me on this thing for three hours, freezing my ass off. They finally pulled it out from under me. Apparently what they failed to consider was that the mattress was a gel-filled variety. It absorbed the cold same as me. So even though the cooling blanket was gone, I was now lying on a cooling mattress. The stupid bastards got my temperature down to something in the mid 95 range. Somehow I managed to get the hell out of their clutches alive.

Docs were unable to determine the source of the fever. They did FIVE blood cultures, TWO stool samples, and two urine samples. If I had it, it was sampled. Everything came up negative. My regular doc was on vacation and the on-call guy wasn't too up on my type of leukemia. He called in a communicable disease specialist. The CDS looked at my chart, scratched his head, and prescribed an IV anti-biotic. Nothing happened. So he prescribed another anti-biotic in addition to the first. So now I'm on two anti-biotics, but we still don't know if that is the appropriate approach. Even on two, nothing happens. Undeterred, doctor CDS adds a THIRD anti-biotic in addition to the two I'm on. Now things start happening. I start getting a fever blister, they have to put me on meds to avoid yeast infections and my fever gets WORSE. By now it's Saturday and the CDS doesn't work weekends and cannot be reached. I feel crappier with every administration of anti-biotics. The nurses can't discontinue them and no one can get in touch with the CDS. I've already had the nurses run the anti-biotic drip at half speed to minimize the adverse effects, but it's still downhill. Finally I figured "To hell with this. I know how to solve the problem." Next time the nurse came at me with another bag of anti-biotics, I simply refused to take them and I refused all other IV anti-biotics. That caused a little bit of a stir, but there's nothing they could do about that.

Next my heart decided to do about 150 beats per minute, so they transferred me to the cardiac floor. Nothing horrendous to report there except by now I'm wondering just exactly how many hours I have remaining on this earth. It was one scare after another.

Finally by Wednesday everything settled down that the three docs who were treating me all signed off on my release. Then here comes a woman from respiratory therapy and decides that my blood oxygen level is too low. She calls my regular doc and he pulls the release authorization. Now I'm so pissed that I can't see straight. They screw around with me until nine PM the following day and I'm finally home now.

Moral of the story? You have to take charge of your own care. Hospitals, left to their own devices, are death traps.

 

[Merlin1047]

It is hard to quantify the effectiveness of prayer if you only study one side, if all you studied were the people praying you probably would have a higher instance of bruised knees in those that pray.

There have been studies that show that those that believe and are prayed over during illness have a higher rate of recovery. They can quantify the result, by statistical data, if not the prayer. Most of those doing the studies believe it is psychosomatic, many others have a much more solid belief as to why and it has nothing to do with soft sciences....

Either way, my family will continue in the belief that what we do can help you and in the wish that you get well quickly.

The wife and I prayed a lot during this latest episode. It seemed that whenever we asked something of God, it happened. And it happened too many times to be a coincidence. Plus a lot of others were praying for us too.