hey, we're still over here at the hospital!

Hi you all.

So, John and I are, like, still in Hershey.  He is having more tests done.  Dr. Claxton wants to know where the fevers are coming from.  Even though they are not occurring now,  Dr. Claxton doesn't feel the issue is resolved, so we have to stay around the hospital at least until Friday night so John can take more tests.

It's been a strange week.  On Monday we were told we could go home, and then when we almost walked out the door we were asked to please not leave, so John could get additional tests done this week.  I like it better this way, because we would have just had to go home, and come back in a week for John to do the tests anyway.  But still, I am ready to go home.

There is nothing new here, really.  Other than medical tests, and cleaning, there is not a lot to do here.  Neither John nor I are driving here in Hershey right now.  My narcolepsy is still not under control well enough; I don't feel comfortable with driving long distances yet.  And John isn't feeling his best either.  Neither of us were even able to get the car up here.  So we can't go too far, and sit around the Lodge a lot.  I am really going to be glad when my neurologist adjusts my narcolepsy medicine.

I almost never get bored and I actually got bored today, LOL.  I was actually sitting on the couch singing a "Bored as a Gourd" song, LOL.  I told John that I can't imagine that we stayed here for 10 weeks after his bone marrow transplant.  And I think there were other times we stayed here as long, or close to it.  How did we do it???

I guess I am just longing for home, and a "normal" life.  Whatever that is.  I can't really remember.  Normal, just for a few days.  Just for a little respite, LOL.  

I am saying this because I think John may have some more treatment in the days ahead, for side effects of the transplant.  They doctors don't even know where the fevers are originating from and are throwing out ALL KINDS of ideas. 

Wow, I am tired.  And I want my kitty.  

Love you all,  Krissy  :)

Tags: bored and tired, but still trusting in Jesus

We're in Hershey

Gee, I feel bad.  Leaving everybody in the dark.  No, I haven't fallen off the face of the earth. 

John and I have been in Hershey.  Since Monday of last week.  Sorry I haven't written an entry before now.  But John was going to about three tests or appointments a day. 

We have been staying in Hope Lodge.  Instead of admitting John into the hospital, the doctors have just been giving him tests all day.  He had very high fevers for about two weeks.  They are calling his diagnosis "fevers of unknown origin".  Now along with his oncologist Dr. Claxton, he has another specialist named Dr. Zurlo, who is an Infectious Disease Specialist.  He is searching for the cause of John's fevers but cannot ascertain the cause.  Actually, John's fevers stopped a couple of days ago, but Dr. Zurlo and Dr. Claxton are still examining him, as these fevers have come on and off for a couple of months now.

John goes to see Dr. Claxton tomorrow (Tuesday).  There is a possibility we may get to go home.  They will still work on his case, but maybe from a long distance.  Maybe they can do more tests from where we live, and see him back in a few weeks.  I hope so, b/c I am ready to go home.

Speaking of home, we are packing up the apartment, b/c we have found a new one!  It is the one I mentioned to you all that we wanted.  I am so excited!  It is nice and new and clean, which will be good for John's immune system.  And it is pretty!  I can't wait to go.  It has more room, so we won't be so crammed.  I am looking forward to a change.

Well, there is so much more that I want to tell you, but I have to get up early tomorrow.  In the morning I have to go to the hospital and straighten out an insurance issue, pick up a med for John, then John has to get a test done, and then it is off to Dr. Claxton's for an office visit.  And then if we get to go home, it is back to Hope Lodge to pack, and ready the room for the next guest.  I guess that is not a lot, it is all in a day's work.  

I want to tell you a lot more that is going on, which I will, when I get a chance.  Yes, I guess I am being mysterious, LOL.

Oh, somebody asked me how my sleep apnea machine is working.  I don't get that until I get back from Hershey.  There was a mixup and they didn't even start me on it!  As far as my Narcolepsy med, it was working great for awhile.  Now I still fall asleep some.  I think the med needs to be adjusted a lot, but I don't get to see the neurologist till August.  It is infuriating, but they are saying there is no way to get in and see the narcolepsy doctor early.  Meanwhile I just fall asleep a lot.  Oh well.

Okay, I must go to bed now.

Lots of love, and I will try not to wait in posting so long next time.

Krissy :) 

Tags: fevers, sleep apnea, narcolepsy, mysterious

My computer is secure

Hi!  Thank goodness my computer issues are resolved and my computer is now secure!  Thank you all for the advice you gave me, and the phone numbers for AOL.  It is so good to be back.

This is going to be short, because I need to go somewhere in a few.  I just wanted to let you know I am back on line.  But my entries may be sparse.  I am taking care of John.  He has been running kind of high fevers since Sunday.  That's a week now.  His fever got up to 102.7 one night, and is 102 most nights.  At any rate, if he is not better by Monday he is going to have to go to see Dr. Claxton in the cancer clinic at Hershey.  We were told to be prepared to stay on Monday, that John would probably be admitted to the hospital after seeing Dr. Claxton.  I feel bad for John.  He was feeling so much better there for awhile, now he seems to be having a hard time again.

Okay, I said this had to be short!  I must run.  Sorry I couldn't write too much about how I really feel about things.  I will try to get on later.

All my love,

Krissy

Urgent

I don't know when I will be able to write again.  My computer has been hacked into.  I am trying to resolve it with AOL.  I can't even find their number, b/c the person who has done this to me has blocked me from reaching AOL on my computer (or anybody's computer for that matter).  It is a long story of how I know, but I am positive that somebody else is using my screename to do horrible things in my name.  Until this gets resolved, I can't do any more entries.  BTW, I don't know if the person knows I have a journal, but if they discover I do, they will no doubt be adding entries.  So please, you all know me by now, PLEASE do NOT believe I have written anything that does not sound like me.  This happened one other time where my profile was hacked into.  Pornography was left on my profile page.  I had one JLander email me and ask me if I was into pornography.  I was disappointed to say the least, but she did believe me when I said no.  I do have the faith in you all to know me by now.  So if a bad person adds an entry in my name, I hope you won't believe it.  Meanwhile, I will work on contacting the AOL defraud department.  If anybody knows the AOL defraud department phone number (or any AOL no I can call), please leave it in the comments section.  I guess this is all I have to say about the matter.  I hope to be journalling again soon.  But I won't until this mess is cleared up.  Because the person could change any words of mine I write down in the future.  He/she may even erase this entry for all I know.  So I hope you get a chance to read this.  Meanwhile, just wanted to let you know that John is having a little bit of trouble with fevers again.  I hope he doesn't have to go back to Hershey.  Please pray.  Okay, that is all for now, Love you all lots, Krissy.   

Don't worry, we are home now

Hi.  John and I just got back from Hershey yesterday.  Actually, we got back a few days before that, but had to go back again.  I guess I should explain.  John finally got out of the hospital.  I was scared for awhile.  His temperature got up to 103.8.  But being the fighter that he is, he pulled through, as always!  And we came home.  Then after being home for a few days, we had to go back again so he could be checked out again.  Dr. Claxton said he was very pleased with John, and that he does not have to come back for 8 weeks!  If John makes it, this will be the longest that he will go without having to come back!

They gave John a slew of tests to find out why his ANC and WBC have been low for the past two months.  But they found nothing.  But all the tests have not come back.  If they find anything in the tests, they will call us up.  But Dr. Claxton is pleased right now, b/c John's ANC has come up, even though he was artificially stimulated with a shot called Nuelasta.  Because even though he got the shot, his counts are now rising on their own!!!

At any rate, the reason, the reason I did not tell you about what was going on before now, and that John is ok, was b/c when I got back into town, I could not get my computer to work for several days.  It STILL does not work.  I can't sign on.  I believe it is AOL.  I am typing this entry from my father's computer.  I wanted to do it today, so that you all would no longer worry, and know that John is ok.  Sorry that I have put you to worry.  I tried for about 3 days to get the computer to work, before I went back to Hershey, to no avail.  So sorry.

Well, that is about it, except we are moving, to an apartment in the same town.  I will tell you all about that later.  The reason is John needs somewhere that is newer and cleaner for health reasons.  He needs a two bedroom apartment so that he can go into a separate bedroom when his counts are low so that he doesn't catch anything from me.  We talked to our landlord and he has already let us out of our lease early.  We are looking at a place that is new and clean, almost brand new, that we like very much.  If you don't mind praying, please pray that we get it.  It means the world to us.  :)

Okay, must run.  I am going to get off my Dad's computer and go eat breakfast.  

Love you all lots, Krissy :)