Merlin1047 updates

Merlin1047

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Mar 28, 2004
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After watching the number of views on the original thread go over 600, I somehow got the impression that a couple of folks may be interested in discussing this subject. Don't have much time right now, but I'll edit this later and update periodically.

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I don't mind discussing the situation. I've received a good bit of information from folks on the board and perhaps I can reciprocate should someone find themselves facing a similar situation either personally or by way of friend or family.

A few things have changed for me since the whole process started. First, I've always been a pretty independent and self-reliant SOB, sometimes to the point of arrogance. I've learned that accepting help from your friends isn't a sign of weakness. I've learned some patience and to accept things I cannot change. And I have seen a depth of determination, character and love from my wife which I had not previously appreciated. I've learned to be grateful just to wake up in the morning and enjoy the sunrise, smell the scents from the woods behind the house and to feel my own heartbeat. I'm closer to my family than I have ever been. I've talked to God a lot.

But so much for the philosophy. To recap the treatment protocol, it involves eight rounds of chemo, each lasting about five days. Each requiring hospitalization for about a week. Then it's home for 3 to 4 weeks while the body recovers from having been poisoned by the chemo. The trick is that the body rebounds from the effects of chemo in a sufficiently short time frame to permit another round of chemo before the cancer cells have an opportunity to regenerate to previous levels.

Right now I have completed round one of chemo. The doc was hoping to see the blast (cancerous white cells) cell count go to zero. I had a blast cell ration of 60 percent, the first chemo treatment knocked that down to about eight percent. Not quite the zero we had hoped for, but it will have to do.

Right now we're waiting on the first recovery phase. I've had several blood transfusions and platelet infusions because my antibodies have been killing the platelets almost faster than they can pump them in. During my last consult with the doc, we agreed to suspend platelet transfusions in order to attempt to soothe my antibodies and to allow my body to generate its own.

Blood test today showed that my platelet count has held steady now for the last three days. It's only 8k, which is far below the norm of approx 150k. The danger is that hemorraghe may occur since platelets are a clotting agent. I am on a medication to improve clotting, but it only helps so much and has its own undesireable side effects.

My white cell count has also been steady, but also extremely low. It's level is 0.8 and the minimum should be about 4.5 to 10.

So that's pretty much everything up to date. If anyone has any questions, don't hesitate to ask.

And most importantly, thanks again everyone for your expressions of support. That's another thing you learn at times like these - I can face pretty much anything, but it helps to have friends to share.
 
Merlin1047 said:
After watching the number of views on the original thread go over 600, I somehow got the impression that a couple of folks may be interested in discussing this subject. Don't have much time right now, but I'll edit this later and update periodically.
Merlin, you should know we all care about you! You post what you want. Keep what you wish private. Email or pm those you believe will keep quiet what you wish.

I do think it does all of us a service, to follow along with your illness, but that is a choice best left to yourself and your wife.

K.
 
They told me I'd lose my hair, but nothing happened for nearly two weeks. Well it's coming out by the handfull now!

I'm thinking about getting one of those multi-colored clown wigs.
 
Merlin1047 said:
They told me I'd lose my hair, but nothing happened for nearly two weeks. Well it's coming out by the handfull now!

I'm thinking about getting one of those multi-colored clown wigs.
Hey, with your 'top gun' sunglasses and a slick head.....you'll still look cool!
 
Merlin1047 said:
They told me I'd lose my hair, but nothing happened for nearly two weeks. Well it's coming out by the handfull now!

I'm thinking about getting one of those multi-colored clown wigs.


What about a multi-colored Mr. T style mohawk?
 
no1tovote4 said:
What about a multi-colored Mr. T style mohawk?


How about I just paint a mural on my noggin?

Or maybe rent advertising space.

String Christmas lights?

Rotating beacon?
 
Mostly good news today.

Blood test showed some positive developments. Platelet count up to 22k from previous 8k. Still a long way from normal (140K) but moving in the right direction.

White cell count up to 1.1 from previous 0.6. Again, a ways to go to the bottom end of norm (4.5).

But with both numbers nearly doubling, I'm happy with that.

Red cell count down well below norm, which is strange because I've been eating like a damn pig. The result is that today my energy level is down a bit, but I'm still getting around ok, just have to take it about half speed and be careful not to stand up too fast. I guess I'd better get back to eating more liver.

Overall, I'd say we've bottomed out and are on the way back up.
 
My dad is going through chemo right now for Mantle Cell lymphoma. Fourth time in the last ten years.

He prefers the bald look. Quick rub with a towel after shower....done.

Then there is always that sunglasses / tootise pop look.
 
Merlin1047 said:
Mostly good news today.

Blood test showed some positive developments. Platelet count up to 22k from previous 8k. Still a long way from normal (140K) but moving in the right direction.

White cell count up to 1.1 from previous 0.6. Again, a ways to go to the bottom end of norm (4.5).

But with both numbers nearly doubling, I'm happy with that.

Red cell count down well below norm, which is strange because I've been eating like a damn pig. The result is that today my energy level is down a bit, but I'm still getting around ok, just have to take it about half speed and be careful not to stand up too fast. I guess I'd better get back to eating more liver.

Overall, I'd say we've bottomed out and are on the way back up.
Good news! :thup:
 
Merlin1047 said:
Mostly good news today.

Blood test showed some positive developments. Platelet count up to 22k from previous 8k. Still a long way from normal (140K) but moving in the right direction.

White cell count up to 1.1 from previous 0.6. Again, a ways to go to the bottom end of norm (4.5).

But with both numbers nearly doubling, I'm happy with that.

Red cell count down well below norm, which is strange because I've been eating like a damn pig. The result is that today my energy level is down a bit, but I'm still getting around ok, just have to take it about half speed and be careful not to stand up too fast. I guess I'd better get back to eating more liver.

Overall, I'd say we've bottomed out and are on the way back up.

Very happy to hear that, Ill say some extra thank you's to the man in the clouds tonight!!!!
 
Today's blood test gave us mixed news again, but mostly good. The bad news is that the red blood cell count was fractionally lower than the last. Last count was 6.9, today's count was 6.7. The low end of normal is 11.0. So I'm still pretty anemic and as a result, we have to go back to the hospital tomorrow and I'll have to get a couple of pints of blood. At least that will be on an outpatient basis and I'll get sprung shortly after the transfusion is complete. The rest of the news is good. Platelet count is rebounding nicely, reaching a level of 59k from the previous 22k. White cell count is also coming up, 2.5 from previous 1.1 and 0.6 prior to that.

Overall, I feel pretty good and I'm optimistic that the red cell count will begin to recover along with the rest of the numbers.

Hopefully everything will be up to a sufficient level so that I can start round two of chemo in about a week or so.
 
Oh - almost forgot - the hair, after hanging on for longer than expected, is dropping out with a vengeance. I wake up in the morning and it looks like I've been sleeping on a fur pillow.

I thought about sterilizing the dog's clipper and giving myself a really close haircut, but at the rate it's falling out I think I'll just wait and see if that will even be necessary.

Then I'm going to paint my head brown and masquerade as a six foot tootsie pop.
 
Merlin1047 said:
Oh - almost forgot - the hair, after hanging on for longer than expected, is dropping out with a vengeance. I wake up in the morning and it looks like I've been sleeping on a fur pillow.

I thought about sterilizing the dog's clipper and giving myself a really close haircut, but at the rate it's falling out I think I'll just wait and see if that will even be necessary.

Then I'm going to paint my head brown and masquerade as a six foot tootsie pop.

How many licks does it take....
 

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