Saturday, July 21, 2007

From Krissy

Hi you all.  John and I got back from Hershey today.

I'm feeling grateful tonight.  Grateful that it looks like John's cancer is not back.  That was the decision made by his oncologist at yesterday's appointment.  

Actually, Dr. C. thinks John is doing quite well.  All tests have come back negative.  Dr. C. decided not to do the biopsy b/c there was no sign of cancer.  

John's labs (counts and levels) were also exceptionally good.  Except for the red cells.  The Hemoglobin and Hematocrit were much too low.  

They were almost low enough to get a blood transfusion (red blood cell packs).  

We are hoping he will not start to need to get blood transfusions again.  He hasn't had to have them since February.  This meant that the Hemolytic Anemia was probably gone.  Now we are wondering if the Hemolytic Anemia could be back again.

What does this mean?  Well, we will take it one day at a time.  Perhaps a spleenectomy?  Who knows.  We are not even going to think about that right now.  We have packing and moving to get through, LOL.

Right now John is getting Arinesp shots (very similar to Procrit shots, you may have heard about them on TV) to help raise his red blood counts in hopes that this will stimulate their growth.  If that occurs, then maybe he won't have to be transfused.

Actually, John is looking pretty good, and getting stronger every day.  I was pretty worried about him about a month ago, but now the fevers have stopped and he says he is feeling really good.  Praise God for that.

Sorry I alarmed you all.  My bad

Ok, I have to get back to my packing.  I know I told you all I would tell you how my sleeping is going.  But I don't want to make this entry too long.  I just wanted to tell you John was ok. 

Suffice it to say that the sleep thing has been hard.  First hard, then easy, then hard again.  Last night I guess went ok, but I kept having nightmares.  I could hear the pressure of the air (from the hose of the sleep apnea machine) in my dreams, and dreamt all kinds of weird things.  One of the things I dreamt was that a grenade exploded in my face.  Another thing I dreamt was that I was a baby in my mother's womb.  This is all b/c of the sounds of the air and the pressure from the machine.  I DO NOT like the weird dreams, LOL.  The night before I dreamt I died.  I DO NOT want to have these dreams, LOL.  I just want to be normal.  On the other hand, I don't want to die from stopping breathing w/o the machine.  Oh well!

Ok, I must run.  John is waiting for me.  Love you all,

Krissy :) 

Thursday, July 19, 2007

From Me

Sometimes, life seems to go along smoothly. Other times it is just one huge roller coaster ride. Ups and downs that makes us a nervous wreck. We ask, how much more of this can I stand?

Well, we can stand it all. How? By finding a fixed point and staring at it with all our might. That helps to keep us on an even keel. There is a wonderful point that helps me and I know it helps you. Just fix your eyes on it and hold on tight. You two will pull through.


From krissy

Ugghh, it is too early to be up!  I am often up this early, but, for some reason this morning, I am just so tired and I can't seem to get going. 

The reason I am up so early is b/c John has an appointment with Dr. Claxton in a litle while.  Yes, we are at Hershey again, LOL.  We got here yesterday.  Hopefully we will leave tomorrow.  If all goes well.  I think all will go well b/c John is looking and feeling a lot better than he did  two weeks ago. 

His fevers are gone (for now), but they will still want to figure out where the "fevers of unknown origin" came from.  John has been getting tests done and so far the tests have not shown the cause of the fevers.  

Dr. Claxton will probably do a bone marrow biopsy today, hopefully the LAST test in the serieies, John says (he is sitting next to me helping me write this). 

Okay, about John getting the biopsy.  Dr. Claxton has already said that it is very unlikely that the cancer has come back.  He is just doing the bone marrow biopsy because he has to be sure. 

Wait a minute.  This is weird.  I am sitting here calmly typing this, like it's no big deal.  Why?  I don't know.  What else am I going to do?  If anything is wrong, I can't change it.  Besides, we don't know there is anything majorly wrong.  Still on some level I am upset, or scared, or tired, or all of the above.  I'm fine, but I'm also all of the above.  Sometimes I wish I didn't have so much stress. 

I'm only telling you all this because I don't want you to be the last to know.  If it turns out he does have something serious, I
want you all to know, b/c you have been there from the beginning.  John and I debated at first whether we should say anything, until we knew what his diagnosis was.  But then we thought it would be better to just be open about what is going on.  Because you all deserve honesty.  Okay, I'll spit it out.  With these fevers of unknown origin, one third of the time it is b/c the cancer has returned.  

So Dr. Claxton has decided to do a biopsy.  At first Dr. Claxton  wasn't going to do it, b/c the last bone marrow biopsy had such stupendously good results (remember that?  it went to the Mayo clinic and it showed that John's chromosomes had even switched back to normal, and that he was 100% donor). 

But the biopsy before that one showed immature cells.  Which isn't good.  Rember that?  Remember at that time the oncologist said it must have been some medicine John was getting (Neupogen) that skewed John's test results, making it look like he had cancer when he didn't.    

Well, Dr. Claxton has decided to go ahead with the bone marrow biopsy.  Just in case their was an incorrect reading of the last biopsy which was very hopeful and showed remission.  In which case, horror against horror, his cancer is actually still here.  

Bust most likely the fevers are being caused by something else.  I think.              

The fevers could be caused by any number of things, but what's most likely is a viral infection according to Dr. Claxton.  He said that with a lot of viral infections, all you can do is let them run their course.  John is sitting here feeding me the information about the viral infection.  Funny, I don't remember Dr. Claxton saying that.  See what happens?  You hear the big C word and you get so scared. 

So in a little while we will be off to the hospital (we are staying at Hope Lodge).  John will get some lab tests done.  He is also going to have to get a "type and hold" b/c his red blood cell count is too low.  A "type and hold" is like a "type and cross match", which means John's blood is drawn, and the lab tests his blood to see what blood on hand would match John's blood.  If John's blood counts happen to be real low, this will mean he will need to get blood (some red blood cell packs) this trip.  Hopefully, it won't happen, and I doubt it will.  But it appears there has been a little downward trend in his counts.  He may start needing blood (red blood cell packs) again.  I hope not.  I hope the Hemolytic Anemia is not back.

What if I told you he looks really healthy, LOL?  HE DOES!  That is all I can say.  Just wanted to tell you everything.  Not throw it on you all the sudden w/o any explanation, later on.  If we would have to do something like that.  Let's all pray NOT.   

We'll keep you informed of everything that's going on.  The biopsy test results probably won't be back for three or four weeks. 

Switching subjects, the packing is exhausting us!  I never thought moving took so much.  Gee, I've done it before, but I don't remember it being this tiring!

I am also throwing out a lot of things.  Very emotional!  It feels like I am throwing out my life, LOL!

Changing the subject again, without a segue, LOL, I have wanted to tell you all about how the sleep apnea machine and my sleeping has been going.  And my daytime alertness (or lack thereof).  I just haven't had the time to post an entry about this.  I have had so much to do.  But I will post an entry.  If not in Hershey, then when I get back.  Probably when we get back home, b/c we are hoping to leave for home tomorrow.

Ok, must run, we are off to the hospital very soon.  Hope everyone is doing well. 

Love you all, Krissy :)