We may come home.

It looks like this is going to be a short hospitalization for John. He just got to the hospital on Monday and they are already talking about discharging him today (Thursday).  Either today or tomorrow. 

Dr. Claxton has decided that John will get chemo for four to eight weeks, probably eight, to try to help the Hemolytic Anemia.  And he figured there was no reason John couldn't get the chemo where we live, as well as the blood John will need, so he decided John could be sent home soon.  Then the doctor doing the rotations made the decision yesterday that John could come home today.

I hope it is not too soon, but John is looking so much better than when he came in.  Like a different person.  And he can get the blood and chemo where we live.  Mitzi, Dr. Claxton's nurse, has set it up so that John's blood will be available where we live, twice a week, no matter what, so that if he needs it, it will be there, instead of him having to wait days like before.  So that will be a new and excellent thing.

So anyway, it was Dr. A. that decided John should go home today.  I know that Dr. Claxton wants John to get treated at home, but I am not sure when he wanted him to leave.  But I feel ok about John leaving now.  Oh, there has already been one diagnostic test, and John's Hemolytic Anemia has improved!  After one treatment of Rituxin (chemo).  So I am excited.

But I remember this happening once before, and thinking he was going to be cured by the chemo, so I asked Dr. A. if the chemo would really cure John, and he answered that it hadn't in the past, and that Dr. Claxton thought it probably wouldn't.  So Dr. Claxton will in the future most likely take out John's spleen.  Does anybody know if a spleen is an important thing to keep?  To me this is scary.  I keep hearing opposing opinions on this.  Well you see, maybe it is important to keep one's spleen, but if you are going to die from something else if you leave it in, maybe you have to get it out.  John is requiring four bags of blood every week now, and with each bag of blood, it is becomming harder and harder to find a match, because each bag adds new antibodies, and makes the next bag have to be rarer.  Eventually, they may not be able to find blood for John.  There is a possibility that he got a bag of blood that was not a match for him at one time - somebody made a mistake.  That's what one of the docs said.

At any rate, if it is alright healthwise for John to be at home, I am really excited about being there.  John and I will be able to do things in our own little nest!  It will feel so good to be at home.  John will be able to get the blood and chemo at the local hospital there.  We will have as normal a life as possible.  I am feeling positive. 

Okay, I have to go now and see John at the hospital.  I love you all.  I will get back to you and let you know whether or not we came home or stayed in Hershey.  Krissy :) 

       

 

John got chemo last night

I've been so busy I haven't had time to write. 

We are in Hershey again.  Yes, John is in the hospital.  He was hospitalized promptly after his visit to Dr. Claxton on Monday.  I thought he would not have to go in this time, really I did.  But to be on the safe side, we packed bags before we left on Monday in case we were going to have to stay.  I am glad we did.  

He's a lot sicker than I thought he was.  Oh, I don't mean to sound like he is doing horribly.  They may even send him home in a week they said.  But his Hemolytic Anemia is worse again.  He is requiring four bags of blood a week now instead of two.  Which means the Hemolytic Anemia is really being a problem.  The reason they will probably send him home is they will finish his treatment back home where we live.  And the treatment is?  Chemo.  Poor guy.  He has had so much chemo in his lifetime.  But if it will get him better he has to have it.  He already started his first round yesterday.  Since we got here he has had four units of blood and four hours of chemo.  

He also had a CT scan done and it showed fluid around the heart.  Right now they are just going to watch it.  Because it could be worse they said, and if they removed the fluid at this time, it would just come back.  The fluid build up is caused by complications from the transplant, as well as the constant blood he has been getting.  But if it does happen to get worse in the future, they will have to operate.

Okay, so what else?  I really can't think of what else is going on right now, perhaps because I covered it all, or perhaps my brain is just tired.  

Tonight tired is a good word to describe how I feel.  And shocked.  Because surprised is too mild of a word.  The doctors thought the Hemolytic Anemia wouldn't be making a major comeback, but would be getting better.  And now it is getting worse again.  I didn't think this would happen.  I thought we would be spending more time at home.  I am hoping we get to go home soon.  I hope that's not selfish of me.  Besides wanting John home (but not before he is better), I want to be home too, because I have a lot of things there I wanted to do.  I just want to be home for awhile!

I am dumbfounded, but I am not discouraged.  I am surprised (yes, I really did think he would stay home for awhile!) but I am not despondent.  I am a little disappointed, but, I believe in the Lord's timing, and I believe He will send us home when the time is right, and I will be able to deal with that timing, no matter when it is.  It feels so good to have that kind of faith in place, and to be able to trust. 

So on I go, onto another day.  Praying that John get better and better, trying to be there for him.  Trying to keep his spirits up.  And trying to give the doctors all the information they need to make good decisions regarding his care.  Okay, I'm off, but maybe I'll take a little nap before I go to the hospital, LOL.

Love you all,  Krissy :)

Photo Hunt Participants...

Photo Scavenger Hunt #97

The subject for this week's Scavenger Hunt was "Thanksgiving Theme".  These were great entries!  You  all invited us into your home on this special day and I want to thank you for that!  Here are the very special entries:

Footprints in the Sand

my spot

My Hugs Journal

Promise... Me

From Here to There

Confessions Of An Angel Waitress 

Lost in my own thoughts

Dribble by Chuck Ferris did art and leaves.   

Thanks for playing, Krissy :)

*Edit:  There will be no Photo Scavenger Hunt this week coming up.  I just don't know if I will be in Hershey or not with John.  I just can't handle doing it.  Sorry.  I will return as soon as possible to doing the hunts.  Maybe the following week.  Thanks for being patient, my friends.  Krissy :)

Introducing a Christmas journal!

Tomorrow morning John and I are going to see Dr. Claxton in Hershey for a scheduled appointment.  Hopefully we won't have to stay.  He has been running a fever for about a week, as high as 100.7.  **Sigh**

I wanted to let you all know that Val and I have started a Christmas journal.  It is called Joy To The World!   We will be adding a new entry every day in December.  It will be informative and lots of fun!  Go check it out.  I have already opened it up so you can see the first entry!  Please consider putting it on alerts.  :)

Love you all lots,

Krissy :) 

A friendly competition!

Something exciting is about to begin in J-Land.  It is Kellen's next Journal Tournament, and it is called Tournament Revolutionized!  I have participated in two of his tournaments  and they have been a blast!  Basically what occurs is Kellen gives us questions, and we search out the answers.  We can use the internet, friends, books or any source we want, we just can't ask each other for the answers.  The person who gets the most answers correct wins an award for his sidebar!  Usually Kellen has three parts to the tournament, but this time he is only going to have one part of 20 questions, a shorter version.  So this would be a good time for you to try it out!  Go to his journal and sign up!

Kellen has given us this blurb to put in our journals to explain about the Journal Tournament:

JOURNAL TOURNAMENT-A three task tournament between journalers, building community and friendly competition in J-Land.  The tournament is in an experimental phase...a one task 20 question Tournament Revolutionized.  If you sign up, you will be asked to complete those 20 questions by the appropriate deadline, and whoever has the most points, will be declared the winner!  It's a great way to get involved and see if you like the Journal Tournament without signing up for the full three tasks.  Everyone who has joined the past three tournaments has had a blast!  See what it's all about... http://journals.aol.com/love2sing2007/JournalTournament.  Now registering through November 30!  

Happy Thanksgiving

                                      

                    A Thanksgiving Prayer

 

  

Even though I clutch my blanket and growl when the alarm rings each morning, thank you, Lord, that I can hear.  There are many who are deaf.

Even though I keep my eyes tightly closed against the morning light as long as possible, thank you Lord, that I can see.  There are many who are blind. 

Even though I huddle in my bed and put off the effort of rising, thank you Lord, that I have the strength to rise.  There are many who are bedridden.

Even though the first hour of my day is hectic, when socks are lost, toast is burned, and tempers are short, thank you Lord, for my family.  There are many who are lonely. 

Even though our breakfast table never looks like the pictures in magazines and the menu is at times unbalanced, thank you Lord, for the food we have.  There are many who have no job.

And Lord, when I grumble and bemoan my fate from day to day, please help me remember the gift of my life.

Author Unknown

  

something fun to read:  questions called in to Turkey Talk-Lines

John and I wish you a very peaceful and Happy Thanksgiving.  Love to all my friends and family, Krissy

There's no place like home!...

Hey journal friends!  We got home from Hershey Medical Center last night but I was so exhausted I couldn't do an entry.  I've finally caught up on my sleep so here I am. 

Well, as you can tell, John was discharged from the hospital pretty quickly, by the decision of Dr. E.  When I first heard John was going to go, I was kind of upset and John and I were considering whether or not to phone Dr. Claxton.  Next thing you know the Physician's Assistant came in the room and said Dr. Claxton had been spoken to (I am guessing yesterday's doctor had arranged this - the doctor who was trying to get John the tests!).  The P.A. said that Dr. Claxton wanted John to take a new medicine.  It is a very strong medication that acts against all kinds of fungi, especially mold.  I think Dr. Claxton was worried that John might have fungal pneumonia as John's pneumonia has been hanging on for so long and his pain level is 8 without the pain meds.  And still pretty high with the pain meds.  So anyway, Dr. Claxton gave John about 4 scripts for different meds.  And gave John an appointment for a CT scan and a check up with him on this coming Monday.  This made me very happy and I was comfortable with John leaving the hospital at this point.  So all is well.  If Dr. Claxton wants him back in the hospital on Monday, he will put him back in, but I am hoping John will be able to be treated at home.  But at least he will get a thorough check up.

So last night on the trip home from the hospital, when we got two towns over, I looked up, and I noticed the town was all decorated for Christmas!  Gee, they start even earlier than me!  I am not talking about individual houses, but the actual town.  Here in PA the whole towns get decorated, by the local county governments I think.  Or maybe townships, I am not sure how they do it exactly.  Anyway, when I lived in VA, we never did anything like that.  So John and I are looking around at the pretty Christmas decorations.  Each pole along the road is decked out in a wreath with a bigred bow, LOL.  And we get out and I notice it is snowing, LOL!  Crazy.  I am thinking, but it is not even Thanksgiving!  And as we got into our hometown, I noticed it was also decorated for Christmas downtown!  Big silver and blue snowflakes that sparkle were attached to the poles.  They were so pretty!

Okay, now that I am in the holiday mood, I better get off here and do some holiday things, LOL.  Oh yes, I better think of Thanksgiving first, I still have a little shopping to do, LOL.

Love you all, Krissy :)

   

photo scavenger hunt #97 subject...

         

Photo Scavenger Hunt #97 will be due on Sunday, November 26, at 11:00 PM EST.

This week we will do a "Thanksgiving Theme".  I thought we'd be flexible.  Here are some ideas.  Take a photo of your favorite holiday dish, or if you want to, take a photo of your whole holiday meal.  Or take a photo of something you are thankful for.  For you across the pond, and others, do anything you'd like.  Perhaps you could join us by taking a photo of something you are thankful for.  Just have fun and take it easy this Holiday week!

Please place links to your entry submissions in the comments section below, including your full entry URL.  Thanks for playing!  ~Krissy :) 

Aggravated!

Most of you probably know by now that John is back in the Hospital - Hershey Medical Center.  We had to leave suddenly by ambulance.  We've been here since Friday.

This admission has been so frustrating.  I am not going to go into too much except to say this.  One oncologist believes John's pneumonia is still really bad and wants him to stay in the hospital, the other one insists he leave tomorrow (Monday).  So we will probably be leaving on Monday and getting home Monday night.  The doctor who insists that John doesn't have pneumonia, or not much of it, won't let any tests be run, won't let the other doctor do an x-ray or CT scan, and discontinued John's antibiotics for his pneumonia that was started by Dr. Claxton about a week ago.  You do NOT discontinue a course of antibiotics.  Even if somebody is feeling better they are supposed to take them until they are gone, because the illness can come back.  Everybody knows that, especially a doctor.  I wonder what he is doing.  Why does he keep insisting John doesn't have pneumonia?  He keeps telling him, you must have pulled a muscle or fractured a rib.  Meanwhile, the hospital that sent John up in the ambulance assesed him with an x-ray and determined he still had pneumonia.  Also a week ago on Monday Dr. Claxton took an x-ray, and read it, and said that John had pneumonia and fluid on his lung.  But Dr. E. insists it is a pulled muscle instead.  He told the other oncologist he could run tests in the morning, and then in the afternoon stopped him from doing so, then told him John was going home Monday morning.  So unless something drastically changes, we will be coming home.

Another reason John came up here besides the pneumonia (which by the way hurts him at a level of 8, on a pain scale of 1 - 10, 10 being the worst pain he has had in his life), is the fact that he needed blood again.  But not a little bit.  Four bags!  Yes, four bags in one day.  He was white as a ghost when he got to the hospital.  He had gotten blood one week prior, and he needed four bags instead of two this time.  To those of you who understand counts, his HGB was 6 and his HCT was 17, after getting blood one week earlier.  Folks, that is close to what he was when he was first in the hospital with the Hemolytic Anemia.  And according to Dr. Claxton, he is supposed to be getting better.  So sad.  But the odd thing is this.  On the tests they ran this hospital stay, John IS getting better.  So they can't figure out why he needs the blood.  They can't understand what is going on.  I guess what they checked for is getting better, something else must be going wrong.  Now they have to find out what it is and correct it.  But they are puzzled.

Never ending.  Never ending.

I am a little concerned about John going home, because I don't want him to have to turn around and be hospitalized again in a week.  I am excited though that we may have a Thanksgiving at home, and am hoping to stay home for December and Christmas.  John's parents are coming for Christmas.  And I have so much planned for fun.

John has an appointment with Dr. Claxton in a week from Monday (that's one more week).  So at least he will get the CT scan and maybe Dr. Claxton will give him some more antibiotics, who knows.  I'm sure Dr. Claxton will make a good decision.  I feel much more comforted knowing John will have this appointment next week.

Okay, I am making this entry a little too long.  Oh, one more thing, LOL.  John is receiving an award from our local cancer group tomorrow.  He won't be there to be able to pick it up, but they are going to pick it up and deliver it to him in a few days.  It will be presented during a Thanksgiving dinner.  I wrote something up to be read at the dinner in honor of John and emailed it to the Executive Director of the group for her to read to everybody before the award is given out.  I think I wrote a pretty good speech, LOL.  Anyway, they picked John this year to give it to because he is a fighter and a survivor, and because he has a good attitude.  I am so proud of him!

Okay, got to get off of here.  I just wanted to tell you all to go to There is a Season to see all the Photo Scav Hunt links (for the subject ART).  Also go there to find the Monday Morning Question and the subject for the next Photo Scav Hunt.  My sister Val is graciously doing it for me while I am in Hershey.  She is the best!

Okay, must run, love you all, Krissy :)

 

 

Scalzi's Weekend Assignment #139: White Meat v. Dark Meat

                                   

Scalzi's Assignment:

Weekend Assignment #139: It's time for Thanksgiving dinner! Which do you prefer -- white meat, or dark meat? Explain your answer. Because it seems that most people have a preference one way or another, and sometimes they can get testy about it.

For those of you who for some reason disdain the whole turkey scene, answering "neither" is acceptable, but you need to explain why and offer an alternate dish for consumption.

Extra credit: Being Thanksgiving, note one thing you've been thankful for in 2006.

Oh, this one's easy!  White meat rules.  Dark meat is gross!  There is a reason people don't like dark meat.  It is too rich.  It is greasy, man.  Sometimes it is even slimy!  Makes the tummy ache.  And what is the problem with a big plate of white meat slathered in gravy anyway?  Gravy is one of the four basic food groups, is it not?  Nice salty gravy, that is the way to go! 

What am I thankful for in 2006?  That I wasn't part of a Ron Popeil infomercial audience, nor do I work for the man!  His infomercials last eight hours long!  You remember ~ "Set It and Forget It!" 

Okay, that's all folks, have a Happy Thanksgiving and eat the turkey meat of your choice! 

Love, Krissy :) 

Hemolytic Anemia is getting better

We're back again from Hershey.  The trip was was actually nice.  We stayed in a nice motel this time so nobody at Hope Lodge would get John's pneumonia.

John saw Dr. Claxton on Monday morning.  Dr. Claxton looked at John's chest X-ray and said that there was fluid on the lining of the lungs.  He told John to come back in two weeks for a CT scan and another checkup.  John is still in a lot of pain.  Dr. Claxton figures in another three to four weeks he will be over the pneumonia.  Hopefully.

Now onto the subject of the Autoimmune Hemolytic Anemia.  It is actually getting better!  John requires blood less often!  There is also a test to see if it is getting better, and the test confirms that it is.  Dr. Claxton thinks that eventually, some day, John may not even require blood anymore!  Won't that be something else?!

Well I have to get off of here.  This entry is going to be short.  I have lots of chores and errands to do, and lots of phone calls to make.  Talk to you soon, Krissy :) 

photo scavenger hunt #96 subject...

         

Photo Scavenger Hunt #96 will be due on Sunday, November 19, at 11:00 PM EST.

This week's subject is art.  Interpret this any way you would like.  It can be something inside or out of your house.  It can be a painting, a statue, architecture, or anything you would like.  It can even be something you made!  

Please place links to your entry submissions in the comments section, including the full entry URL.  Thanks for playing!  ~Krissy :)      

monday morning question...

           

Cats:  Rule or drool?

Lobster:  Eat or no treat?

Ties:  Wear or nowhere?

Escargot:  Slime or sublime?

The silly things you make up in the middle of the night, LOL. 

Anyway, here are my answers:

cats - rule!!! (even their masters) 
 
lobster - uhhmm, yuck.  Ask me about my childhood experience sometime, LOL, and you'll know why I don't like lobster!

ties - wear!!!  There is nothing like a man in a tie, LOL!

escargot - slimey and gross, gross, gross! 

Okay, now you answer!  Love, Krissy :)  

my sister Grace has a journal!

Sitting here being reflective.  Hey, I am too busy for this!  Anyway, I wanted to tell you all about a new journal.  It is my sister Grace's.  Why not check it out and leave her a comment?  Her journal is The Daily Post.  

Anyway, just wanted to let you know I will be gone for a day or two.  John and I have to go to Hershey.  It will only be for a checkup though.  Then I will be back to resume my busy life.  We WILL spend some time at home, LOL.  Actually John is doing ok right now.  He is in some pain, but is not spiking high fevers, so the doctors are saying he is ok.  So we will be back home Monday night or Tuesday night at the latest. 

Talk at you soon, Krissy  :)           

Lucy, we're homeeeeeee!

Ugghhhhh!  Lost this entry to the black hole.  Starting again!

I was just telling you all how good it is to be home.  John and I got here last night.  It is soooo good to be here!  

John should have his pneumonia for three to four weeks more.  He is still in a lot of pain, and has to lay down a lot.  But at least we are home.  I am so enjoying it here, and he likes to be home too.  

Yesterday's ride home from the hospital was so much fun.  Val's boyfriend (we call him John2) and Valerie picked John and me up from the Hospital in Hershey and drove us home.  Then the four of us sang Christmas carols on the way home!  It was a blast.

Last night I heard my first Christmas song on the radio.  And today I bought my first Christmas presents!  Just a couple of little things.

I also got my first EVER IN MY LIFE call on my cell phone.  It was from Val!  She told me she loved me and to have a good day! 

I would have gotten a call days earlier, but the cell phone was never set up correctly by those who sold me the cell phone.  I had to call the service no., and they did something to activate the ring yesterday, LOL.  And they also did something to give me the ability to retrieve my voice mail.  All that time people were calling me and I had no way of picking up their calls.

Oh, and I was pretty electronically illiterate too, LOL.  I wasn't getting calls after that for another reason, LOLOLOL.  Valerie noticed why.  I didn't have my cell turned on, LOL.  Val told me I had to turn it on, and keep it on when I wanted calls.  I didn't know that, LOLOLOL.  Oh well, you live and learn!  So Val finally called and now I know it works, LOLOLOL.  

Okay, gotta run.  John is having some trouble, and the dishes are awaitin' me.  I have to pretend to be a housewife, LOL.  Just long enough to make it back to this computer again, LOL.  Actually, I am not a bad housewife, it is just that I have been away from this computer for so long, there is so much I want to do on here!  Arggghhhh, computer withdrawl from my very own computer!  I would like to spend about a day on here, LOL.  Maybe two!  Okay, now that my little confession is done, I gotta run.

Love you all, Krissy :)   

got a VIVI for BEST EMOTIONAL!

Thank you!  Thank you!  Thank you!  Thank you!

That's a lot of thank yous because I have a lot of thanks in my heart.  I want to thank you all for awarding me a VIVI.  I received BEST EMOTIONAL.  I guess I am emotional, LOL. Anyway, it is SUCH an honor to be recognized by my peers.  I never drempt I would get an award.  I want to thank you all.  You all are the best.  I never thought when I began journaling that I would meet such a great group of people.  You are my second family.  I love you all.

Krissy :)

Check out VIVIs here

John is getting discharged Friday

Hi journaly peoples!    

The doctors came in John's room tonight and told him he was going home tomorrow (Friday).  They took two X-rays of the pneumothorax today, decided it wasn't that large, and said it would reabsorb itself.  I hope they know what they are talking about.  I am nervous about John returning home, but there is nothing I can do about it.  I believe the hospital tries to push you out at the earliest date possible it seems.  I am not sure why, but that has been the way it seems to operate.  I am also wondering why they are sending John home without knowing what kind of pneumonia he has.  The cultures have not had time to grow yet.  But they said that John would be OK, they would just send him home on oral antibiotics just like the ones he has been getting through the IV.  One of the nurses said that John should still have the pneumonia for weeks and weeks.  That it hangs on for a long time.  I had mentioned to Dr. E. that perhaps we should go over to Hope Lodge for a day, and he said he was not comfortable with John being at Hope Lodge with pneumonia.  Yet he is discharging him to home.  Wow.  Well I guess I have to trust the doctor knows what he is doing.  Anyway, Dr. E. set up an appointment for John in two weeks with Dr. Claxton.  I feel good about that.  Dr. Claxton can check John out.  And at that time he can decide what he is going to do about John's Hemolytic Anemia. 

While I am a little nervous, and wonder if we will end up back here, in another sense I am relieved.  I wanted to be home for Thanksgiving.  And Christmas.  I hope we get to stay home through the Holidays!  John will be sick for awhile and will have to lay around a lot, but at least we will be at home, and if he does do OK there, then it will be good, because it will be familiar and nice surroundings. :)  And I have so many things I want to work on at home, both things I have to do AND some fun things!  Now I am getting excited!  Ahhhh, to have a normal and boringlife again, LOL.  Life's little rewards!  

Okay, love you all, Krissy :)

of penumothorax and a cell phone!

Good morning.  For those of you who are concerned about the hour at which I am up, LOL, I went to bed super early, and woke up early.  So don't worry about me, I am getting enough sleep.  Anyway, I am going back to bed after I write this.  I just wanted to play a little POGO (gotta have a little down time!) and to write this entry. 

So I found out what it was that the doctors were looking for on the CT scan last night.  It was a pneumothorax.  Turns out John has one.  It is an air pocket outside the lungs.  Actually, it causes a partially collapsed lung, because the air is outside the lung, which collapses the lung.  Guess what.  They did it to him during the bronchoscopy.  By poking the instrument through the wall of the lung.  Before they did the procedure the doctor did warn us that this did happen to one in 200 or 300 people.  I asked John if he still wanted the bronchoscopy, and he said yes.  He wanted to stop hurting.  In my mind I was thinking he would have a complication, just because he always gets one.  But then I pushed the thought out of my mind, because I didn't want to be hysterical.

At any rate, a pneumothorax can be very dangerous.  But the doctors said John's was pretty small.  Right now they are just watching it and hoping it reabsorbs itself back into the lungs.  If not, they will have to go back inside the lungs, poke through the lung wall, and suck the air back in.  Then they will have to wait for the lung to heal itself.

Oh boy.

As far as what kind of pneumonia John has, they are not sure yet.  They are going to have to wait "several" days to see what the cultures show.  Dr. E. said tonight that he doesn't think it is fungal (praise God), because it doesn't look like fungal under the microscope or on the X-rays.  So now we wait and see what the cultures grow.  

Well, that's about it on that news.  Actually John is feeling a little better and is not in as much pain!  He went for a walk in the hospital halls tonight!  I am going to keep him walking and sitting up in his bed, as much as possible.  I am excited about his progress.  As are the doctors.

On another note, I finally joined this century!  I have a cell phone now!  I will tell you what.  This is the first cell phone I have ever owned in my life, LOL.  I am so excited!  It will really help with John and all.  I just feel so cool with it, LOL.  And liberated in a way.  I won't have to always be trying to find a phone, or being tied down to a certain area when I am expecting a vital call.  I will be able to move around.  Welcome to this century, me!

Well, I think I'll go back to bed now.  Love you guys, Krissy :) 

some goodbyes

Hmmm.  Let's see if I can keep this short because it is a little after one in the morning.  Probably not, LOL.

Today was a long day.  John had several tests and visits from specialists.  Both Dr. Ehmann, the rotating oncologist, and Dr. Claxton, his regular oncologist came in for awhile.  Dr. E. listened to John's lungs and announced to his students that there was no need for a CT scan, that he could hear something in John's lungs.  Then he asked the students to listen to see if they could hear it.  They each took turns.  John told me later he was grateful that he served some purpose for the student's education, LOL.

Dr. Claxton and Dr. Ehmann conferred and decided that John should probably get IVIG again and chemo to try to stop the Autoimmune Hemolytic Anemia.  He will get it after the pneumonia clears up.  I am hoping John will be able to get it at home and not in Hershey.  I like it here, but I don't want to live here over the holiday season!  I think it will take at least four weeks to be administered.  

So anyway, John went for a bronchoscopy today after seeing the doctors and it was two hours before he returned to the room.  I went upstairs and played around on the computer, answered alerts and such.  Then I grabbed lunch.  When John came in the room I was relieved to see him, he had made it through the anesthesia and had no collapsed lungs, LOL.  I know I can be so dramatic, but it seems lately if something can go wrong, it happens to John, so I started to get a little concerned while I was waiting for him, thinking about the complications the doctor told us could occur during the procedure.

Then John was told that his blood counts were so low, and that he needed two bags of blood.  He didn't get any yesterday because they were worried that the blood would move blood clots along.  But not being concerned about that today, they wanted to give him blood immediately.  So they hung the first bag of blood.  By this time it was 7 PM.  Poor John hadn't eaten all day because of tests and they had forgotten toorder his dinner and it was finally getting here at about 7 AM when somebody busted in the room and shouted at him "Stop, don't eat!  Put your fork down."  I think John had gotten one bite in, LOL.  I asked what the problem was and the nurse said John couldn't have food because he needed to get a CT scan.  I thought this rather odd as Dr. E. said John didn't need a CT scan.  So I made a mental note to ask what the CT scan was for.  Then a lady from transport with a gurney showed up, and she was trying to take John downstairs to have the scan.  "You can't take John off our unit," the nurse insisted.  "You will have to do the CAT scan later.  He is getting blood and could have a reaction, and you wouldn't know what to do.  He has to stay on this floor until he is done with the blood."  Then the nurse told the transport woman she could have John after one bag of blood, then he would get the CT scan, then he could come back upstairs and eat his dinner, then he could have his second bag of blood.  I calculated this all out.  This put John to winding down around midnight.  What a long day for him.

Anyway, then a pulmonary specialist doctor walks in.  She asked John a lot of questions.  Then I asked her why they were doing a CT scan on John.  She said during the bronchoscopy that they MAY have found something unusual.  But she wouldn't tell us what it was until after they did a CT scan and did some conferring (the doctors).  So here I am worrying, wondering the two worst possibilities.  Fungal pneumonia or a tumor.  I gotta cut this out.  My mind is getting carried away with me.  Anyway, they are going to let us know tomorrow I think.  

So on that note, I should probably go to bed.  I need to be bright for tomorrow.  It may be a long day.  There is so much I want to tell you all about, but don't want to ramble on and on.

Oh, I do want to mention that so called "lost item" is found.  It was probably never stolen.  That is good to know that those going through hard times wouldn't do that to one another.

And on a final note I would like to say goodbye to Rex, a stem cell patient who died yesterday.  You will be missed.  And so will you - Kay, Jay, Rhonda, Bill, Roger, and Duke.  Don't think that I didn't notice your passing these past few months.  I think I was just too numb to say goodbye to you all.  Many of you were in the core group who were here all these months John was here also.  Out of all of you who got stem cell transplants, John is the only one still left alive.  And maybe Phil, I am not sure if he made it or not. 

Rex, you were so humerous.  You had such a zest for life.  Goodbye Rex.

Kay, you were my best friend here at The Lodge.  We sat up every night and talked.  I loved you.  I still do.  Why did you have to go?  Goodbye Kay.  I believe we will meet again someday.

Jay, I love you immensely.  You were such a stellar guy.  Even among the Amish, there was not one as honest and as good as you.  I miss you.  Goodbye Jay.  See you in Heaven.

Rhonda, you made me laugh!  And you were always willing to play games with us on nights when we were bored.  Goodbye Rhonda.  Love you.

Bill, thanks for the kindness you showed me in offering me rides to the hospital.  You were such a kind soul.  Sitting there at the kitchen table in Hope Lodge in great health one day, gone a couple of days later.  Goodbye Bill.

Goodbye Roger.  Didn't know you long, because you died about a week after your transplant.  Too bad we didn't get to know you.  Goodbye Roger.

And finally Duke.  You were bigger than life.  You were as big as your name.  Many in J-Land will remember you because I told them how you did St. Patrick's Day for us here at Hope Lodge, and Italian Day.  You had everybody singing along and having a great time.  You will not be forgotten.  Goodbye Duke.

Hello John.      

what kind of pneumonia is it?

Hi journal friends.  Good friends!  If you are worried about me being up so late, don't be.  I took a six hour nap today, LOL.  Actually, it didn't start out too funny.  I was over at the hospital with John.  All the sudden I noticed i was feeling, well, impatient, trapped, like I had cabin fever.  Oh, my eyes are tearing up as I read this.  I feel like such a bad wife.  I usually stay with John till late at night.  But I was feeling stir-crazy.  That is the word that I wanted to use.  That doesn't usually happen until I have been at the hospital for two weeks or maybe a month.  So here I am, sitting next to John, feeling I need to take a break, and it is day two!  It was kind of like having cabin fever.  And I am no good for John like that either.  I get anxious and grouchy.

I told John that I didn't feel well.  Actually I was tired.  It was only two o'clock and I was exhausted.  I guess a lot of it was emotional exhaustion.  "Go back to Hope Lodge and go to bed," John said.  "But you won't have anybody here with you," I replied."  "That's OK,"  John said.  "You will be back in the morning.  What time does the next van leave?  You better hurry so you can catch it."  So I told him I loved him and ran out the door and caught the shuttle back to Hope Lodge.  Then I took a six hour nap, LOL.  Now I feel like a human.  Slightly guilty, but like a human.  But not too guilty, because I will be better for John tomorrow.

Which is a good thing.  He is going to have a bronchioscopy around noon.  By the way, his oncologist (Dr. E., the one he has right now - they rotate every two weeks) said any blood clots have been reabsorbed by the heparin.  Now they are dealing with pneumonia.  So Dr. E. called in a pulmonary specialist.  The pulmonary specialist explained the bronchoscopy.  She said that they would probably take a few snippets of John's lungs, and do a wash of them, to try to determine what type of pneumoniaJohn has.  A nurse told John that he should "pray for bacterial pneumonia.  Bacterial pneumonia we can do something about.  Fungal pneumonia is much harder." 

You know, if you read stories about stem cell transplant patients, you sometimes read about those who die from fungal pneumonia.  Usually it is from a fungal pneumonia called Aspergillosis.  Read more about it here.  One gets it from mold, such as from mold outside, or in an air conditioning vent.  At any rate, I have to try not to panic here...  Maybe it is not even the type of pneumonia he has...

Be right back, going to get something to eat, LOL.  Wow, another night person like me, somebody else has gotten up to study their schoolwork and have coffee!  BRB. 

Now I am good to go!  I have some chicken, two chocolate cookies, and a diet coke, LOL.  I'm laughing at the cookies-diet coke combo! 

So that's about it.  I was going to tell you about something else but I am going to wait till tomorrow.  I am going to see if the issue resolves itself.  I can't find something, and I think somebody here stole it.  But I want to wait to see if it turns up before I assume that.  We work as such a family here at Hope Lodge.  Everybody pitches in and helps one another.  I don't understand why somebody would do this to me.  More about this tomorrow.

Gee, I am thinking about the VIVIs now that the voting is over.  Because I think they are special, they are truly peer awards.  I am sad that I won't be able to be in the chat room this year when the VIVIs are announced.  It was so much fun last year.  The pulmonary specialist said John would be in the hospital for awhile.  This saddens me that John is so sick.  And yes, it saddens me a little that I will miss out on the VIVI announcements.  But of course I would rather John have the care he needs.  I am also saddened that I won't get to vote in the political elections tomorrow (Tuesday).  I didn't even get to research everybody who was running before John was taken to the hospital.  I should have known enough to get us absentee ballots.  It is just that John was out of the hospital three weeks and I got complacent, thinking it would be longer.  Silly me.  I hope we will be home the month of December.  I want to spend Christmas at home... 

Ok, enough rambling, I hope all is well with you all.  I am not going to be able to visit too many journals while I am here, just a hit and miss here and there.  I know you all will understand.

Love you all, hang on, Krissy :)

I forgot to mention...

I forgot to mention something last night.  To play the Monday Morning Question while I am gone, go to Val's journal, There is a Season.  Also go to her journal to play the Photo Scavenger Hunt.  Val will be hosting the games while I am here in Hershey.  Thanks for agreeing to do them again, Sissy.  You are the best!

I believe Val posts on Monday mornings, so hop on over there some time this morning, and they should be posted.

Krissy :)

PS  I am here at the hospital with John.  They are going to be doing the test soon to see if he has any clots anywhere.  I will let you all know.

blood clot or pneumonia?

It all started last night when John was telling me how much pain he was in.  And his fever was climbing.  At first I didn't realize how bad it was.  I thought his side was only hurting because he was shivering so bad (his fever was about 100 at the time, but he usually runs 97 degrees).  So I told John if we could do something about his fever his side would stop hurting.  Maybe if we got some Tylenol down or something.  It didn't work, within one hour he was 101.3.  That's when I told him I was calling Hershey.  Hershey Medical Center is a fine hospital, but they ask stem cell transplant patients to wait till their fever reaches 100.4 degrees before they call and ask if they should be admitted.  And some of the doctors there make you wait till 101 degrees.  So I waited for John to reach 101 degrees, called, and was told "bring him in".

This was pretty early in the morning.  I don't drive much because of narcolepsy ( I am guessing that is what it is, I haven't been able to have it checked yet) so I began calling around to see who might take John and me to the hospital.  At this point John is screaming in pain every few seconds.  He may kill me for telling you all that because he is a pretty tough guy.  Finally he tells me he can't take it any longer and to call an ambulance.

So I called an ambulance.  They loaded him into the back and I got in the front passenger's seat .  It was horrible.  He kept repeating over and over, "I don't know how much more of this I can take."  I didn't know what they were doing to him back there, but he told me later that they were just checking his blood pressure, etc.  And that the more he couldn't take was the pain in his side.

The ambulance took us to the nearest hospital.  They wouldn't take John to Hershey because they have to take you to a local hospital, which stablizes you, and a doctor from there writes the orders to take you to the next hospital.  So at our local hospital they took some X-Rays.  And on John's right side where his lungs are thedoctor saw a "haze".  They told John he either has pneumonia or a blood clot in his lungs.  At this point orders were signed and he was wisked away to the hospital in Hershey, where he is right now.

Oh, wow, I am pretty nervous about everything.  The doctors at Hershey Medical Center talked with me today (yes, I am up here with John.  I am staying with John at the hospital during the daytime, and at Hope Lodge nights).  They said his condition is serious, and they are not letting him eat or drink anything.  I can't imagine not even being allowed to have a sip of water!  They told me they are leaning towards believing it is a blood clot.  Right now John is on saline for fluids, heparin in case it is a blood clot (this can help clots reabsorb), and zithromax (an antibiotic).  They also told me they were going to give him blood tonight.  This really scared me because his Hgb and his HCT are soooo low and he just got blood on Wednesday.  Wow that was only four days ago.  I am glad he is not back local, because it would take them days to try to find a match for his blood.  Last two times it took two or three days.  But that is another story.

Okay, so I am rambling as usual.  I left the hospital tonight feeling horrible.  I didn't want to leave him but he said "go".  I had to take my medicine so I came back here to Hope Lodge.  My car is not here so I can't go back to the hospital and spend the night with him (I have no ride).  Believe or not there are no taxis in Hershey, LOLOLOLOL.  It is just a tourist town mostly, so people don't do taxis.  So I told him that if I went to the Lodge, and he died on me tonight, after all of this, I would be VERY upset with him.  I told him I didn't want to leave, and asked him if he was sure, and he said, "I have a good feeling about this, I won't die tonight, so go, get a good night's rest."  So I left.  And that brings me till now.  I hope this last paragraph wasn't a little to real for you.  And it may seem to have levity in it, but I was very upset when I left the hospital.  But when I came back here to the Lodge I had others who did their best to cheer me up.  Some I knew and some I didn't.  It is so good when you have others who are there for you.  They helped pull me through my fear and funk.  So tomorrow I will be back at the hospital spending time with John again.  

Okay, enough rambling.  I hope some time soon I will have something boring to right about.  And please, if you are the praying type, pray for John.  I am having a feeling this could be a rough one this time.

All my love,  Krissy      

Sorry, I made a big boo boo this week.  I forgot to post a subject for the Photo Scavenger Hunt, LOL!  I don't know where my brain was, but don't worry, there will be one next week. 

Oh yes, today starts the voting for the VIVI awards.  Voting lasts through Nov. 6.  If you want to vote, just go here -----> Clicky Click me for VIVI voting!  

Now on to other things.  John was real weak this week because he didn't get his blood for 10 days.  John is over there laughing saying "It sounds like I am a vampire!"  Anyway, the reason he didn't get it for awhile is because the local oncologist didn't even inform him that he needed it.  When the oncologist finally informed John, his numbers (hemoglobin and hematicrit) were EXTREMELY low.  So John was told to get typed and cross matched (checked to see what blood type, etc he is) and then he was told to wait at home until the blood was ready for him.  You see, John's blood is now very rare.  He is a mixture of his blood, the donor's blood, and a stranger's blood who donated to him along the way.  John now has to wait two to three days to get his blood.  It has to come from somewhere else!  That is why it takes several days.  It is a real shame.  So he suffers the last few days and has to lay down a lot.  We could take him to Hershey where they always have his blood, but that is quite a ride, and is hard to get to every time he needs blood.

Oh, this entry has gotten boring!  I just wanted to say I forgot the Scav Hunt.  Let me get out of this entry!  

Love you all,

Krissy :)