Monday, December 31, 2007

monday morning question


I thought about asking a profound question, like what your New Year's resolutions were going to be, then decided to settle on something much lighter.  Here goes: 


Why does Princess Leia, of Star Wars, have cinnamon buns on the sides of her head?

I'm not going to spoil it by giving you my answer, b/c I want to see what you have to say.  I'll take some of your answers and post them in my next entry or the one after that!

I want to hear what you have to say. 

Why does Princess Leia have cinnamon buns on the sides of her head?

Monday, December 24, 2007

Merry Christmas

I wanted to wish each of you all a Merry Christmas, in case I'm not on the computer again for a couple of days.

What a holy night this is.  And tomorrow is such a holy day, the celebration of the day that Christ was born.  My prayer is that each of you make room for Him in your heart by inviting Him in, and follow Him wherever He leads you.  After all, that is what Christmas is all about.  That He came to this earth to die for us, so that we might live forever, if we accept Him into our lives and but follow Him.  If you accept Him into your life, you will never regret it!

I never got a chance to share my favorite Christmas carol with you all, with everything going on in my life.  So I'd like to do that now.   

Here are two versions of my favorite Christmas song. 

This first one is from MercyMe: 


Please also listen to this second version--it is worth it!  This is The Soul Children of Chicago performing in 1987/1988:


Have a very Merry and fun Christmas,

Love you all, Krissy :)                                       

monday morning question


I have two questions for you, because it is Christmas Eve!

1.  When you were a child, were you scared of the department store Santa, or did you run right up and sit on his lap?

2.  How old were you when you last sat on Santa's lap?

**Krissy's answers** 

1.  I was so scared of Santa that I ran in the opposite direction!

2.  The last time I sat on Santa's lap I was age 28 years old.  It was at a charity function Christmas party.  The children were all getting photos taken with Santa just for fun, and my friend Tanya and I decided to also. 

Now your turn to answer the question.  Answer in the comments section, or in your own journal/blog, and leave a link below, so we can check out your answer!  

Saturday, December 22, 2007

John is doing well

Hi you all!  Just wanted to give you an update on John's appointment at Hershey Medical Center on Monday.

Although the day of John's appointment started out badly due to the ice storm, the day ended better than anticipated.  John's lab results showed that he is doing better than expected.  He got a rather good report from Dr. Claxton.

Although John had a very compromised immune system (almost none) for about five weeks, his immunities are now in the normal range!  Not the best immune system in the world, but he has a regular immune system!  To make sure this continues, Dr. Claxton is tapering John off his immunosuppressants. 

The immunosupressants have been weakening John's immune system since he went on them after the bone marrow transplant.  But he has had to take them so that his body didn't reject the donor marrow (that he got in the bone marrow transplant).  When John stops taking the immunosuppressant in six months, his immune system should be free to work normally.  We don't need to worry about John rejecting his donor, when he goes off the medications, at this point, because his marrow has turned just about all donor.  So this will be a good move.  

So John will be tapering off his prednisone and his immunosuppressant (that he takes to prevent him from rejecting his donor).  When he is off of those two medications, his immune system will probably function normally!  Praise God for that!

What else?  John's kidney function has improved!  It must be that strict diet we have him on, LOL.  This is the best it has been in maybe more than a year and a half!  Not really sure why, but we'll take it!

John's platelets (that make his blood clot) fell a little.  They are not in normal range.  Dr. Claxton isn't worried though, as he has seen worse.

John's H&H are great.  He has enough oxygen in his blood.  He has enough blood.  That is probably because ofthe recent transfusion a few weeks ago.  But whatever works works, right?

Oh, there was only one negative thing in the whole appointment.  It appears that John has carpal tunnel syndrome.  He will probably have to get an operation.  He has increased his writing and typing lately.  You know, the journal, LOL.  Now he has gone and gotten himself carpal tunnel!

Okay, Dr. Claxton thinks John looks really great.  What a blessing to hear at Christmastime. 

I hope you all are doing well also.

Love you all,

Krissy :)  

our crazy electricity situation/ and some ice photos

Hi you all.  John and I are home safe.  We got home Wednesday.  I'm really sorry I didn't do an entry sooner.  A lot of crazy things have been going on this week, one thing after another, and I just didn't get a chance to do an entry before now.

If you remember, the last time I posted, I mentioned we might possibly be evacuated from Hope Lodge.  Well, in that ice storm, a total of 160,000 homes around us did end up losing electricity (which of course includes light, water, and heat, b/c all of these things are generated by electricity).  

So if you remember, I posted on Monday, December 17 that we might be evacuated from Hope Lodge.  Yes, I did do that post at about 3 am, LOL.  At about 6 am, John and I decided to go over to the hospital (Hershey Medical Center).  We wanted to make it there before the electricity went out at Hopoe Lodge.  We didn't want to be stumbling around in the dark, looking for our medications, and such things that we had collected to take with us in case of an evacuation.

Well, we got to the hospital, and went to the cafeteria and ate a delicious breakfast.  Then John and I went to the Cancer Clinic and he got labwork done.  That morning the lights kept surging on and off.  It made me nervous.  I tried to stay out of the elevators as much as possible.

Then I kept hearing something odd.  I kept hearing the power was off in Hershey.  Finally I got the story.  A truck had slid on ice and knocked into a transformer.  The power was out in Hershey!  I was told the hospital was being run by a generator.

Hope Lodge is down the street from the hospital, about a mile, but technically in a different town.  Hope Lodge still had power, LOL.  I evacuated one place, that had power, to get to another that had no power!  But at least the hospital had a generator. 

John and I went to his appointment while at Hershey Medical Center that afternoon.  I will tell you about how it went in the next entry, because this entry is getting too long.  I wanted to end this by showing you some photos of trees in the ice storm.

While ice can be pretty dangerous, and cause damage, I also think it is pretty.  I love seeing ice glitter off the trees.  All the trees in these photos are laden with ice, not snow. 

Aren't they pretty?

Love you all, Krissy :)




Monday, December 17, 2007

we may get evacuated

I shouldn't be up at 3 am.  Just a little nervous.  I did sleep for four hours though, then got up.  The reason I'm nervous is because we were told we might have to evacuate Hope Lodge (where the cancer patients and their caregivers stay) suddenly.  Maybe even tonight in the middle of the night.  See, the ice storm is causing people to lose electricity, heat, water, everything. The water company us called tonight.  They said please try use as little water as possible.  They are down to their emergency supply.

We were told by the manager on duty that she was being phoned in by others, and was being told that power lines were down, and that electricity was turned off allover the place.  That also meant no heat.  The manager of the Lodge, at her house, has no electricity, heat, water, or anything at all.  She phoned in and told us.  She lives very close by.  So we need to be prepared to evacuate if necessary.

When I heard this, I immediately went to John's and my room and prepared.  First thing I did was get out one of our suitcases (well we really have dufflebags), and threw in all of our medications.  That is most immediate b/c without John's transplant meds he would die.  I also need my diabetes meds, etc.

I put in my purse, our wallets, cell phones, cell phone chargers, vital things like that.  Our car keys.  That's about all that would fit.  except a few clothing items for John and his toilet articles.  I zipped it up.

Then I filled another bag.  I took our box of, what is it, I think it is Ginger Ale.  I think it is cans of Ginger Ale.  Now I am imagining you can drink Ginger Ale if you are real thirsty.  It doesn't have caffeine and it should quench your thirst, right?  Provided there is no water where we are going and the water is out, Ginger Ale may be a good choice.  We will need something to drink, right?  Can't be that bad.  I then stuff two bottles of water into the bag.  The last two bottles of bottled water we have.  Then I remembered we had one container left of distilled water that we had brought for my CPAP machine.  Well a half a bottle of water.  So I put that in the bag also.  At least we will be able to drink something if we are stuck somewhere.  If nobody mugs us to get the water!  Oh, and I put a shirt on top of the water when I was done.  This will serve two purposes.  A change of clothing, and to hide our stash.

Okay, I didn't tell you that we would probably be evacuated to the hospital.  Possibly to the lobby, but who cares.  They have generators there, and as long as I am not cold, it is okay.  I don't know if they would run out of food or not, or water to wash dishes, so I got to thinking, I better pack some food, LOL.  So I got together to plastic grocery bags of food.  Nothing ridiculous, something sensible.  I put items in there you didn't need a can opener for, because I didn't have one.  I had some food with pop top lids anyway.  I noticed I had quite a bit of food that I could bring for John and me.  If anything happens we are not going to starve to death. 

I also found plastic silverware, small paper plates, plastic cups, and some napkins.  Then in the hall closet I found a bunch of rolls of toilet paper, and thought, uhm, yes.  If they pack people in the hospital, they could just perhaps run low, LOL.  So I stuffed that in the grocery bag. 

I got strange stares from my packing spree.  I was told by some there that they were just going to go to a shelter such as a Red Cross one, which would be well stocked, and why was I preparing?  I said we wanted to be at the hospital.  And how would you know what they had?  Isn't it always good to be prepared?  Perhaps I am silly.

At any rate, it is good to have your medications.  Most went to bed without packing them.  How are they going to find them if they have to evacuate quickly in the middle of the night?  If they are told to get out, they will be stumbling around in the dark looking for them.  For some of them, it will be a life threatening situation.  I hope all of the transplant patients have their medications packed up.  They will die without their meds, possibly. 

I'm just glad I did what I did.  We have it planned.  We already have the food in the car, waiting for us.  In our bedroom we have the black dufflebag with our medicines, etc,. in it.  If the lights go out, John will grab that one, because it is too heavy for me.  I will grab the other bag by the door.  It has our water and drinks in it.  We will also grab our coats and go.  My coat is laying on top of my bag I am going to grab.  You see, I am a planner, LOL.

Poor John is in bed fully dressed, LOL.  He wasn't feeling too well today.  When he is not feeling well he gets what looks like black eyes, especially on his upper eye lids.  They turn black and red.  We have never figured out what causes him to have what looks like black eyes yet.  He doesn't have a fever, so we don't know what's wrong.  A super compromised immune system?  An infection? 

Maybe we will get a clue tomorrow.  He will be having tests in the morning and an appointment in the afternoon with Dr. Claxton.  Provided the cancer clinic at the hospital continues to operate.  I think the hospital is a good place to be stranded if you have to be stranded somewhere.

Yes, this has been one ice crazy storm.  I took some photos.  If they came out I will share them when I get back home.  

If you don't hear from me for awhile, then you will know that I maybe got evacuated and couldn't get to a computer.  There is one at the hospital, but they may cut off it's usage if power is limited.  I don't have a laptop. 

I'll let you know soon if everything is fine.

Thanks for letting me ramble, Krissy :)


Sunday, December 16, 2007

we're at Hershey Medical Center

Here we are, sitting in Hershey, amidst a pretty bad ice storm.  John has an appointment tomorrow.  We need to find out why his immune system is so compromised.  I doubt we will though.  His physicians have been trying to figure it out for months.  Next month will be two years since John had his bone marrow transplant, and he shouldn't be having such a compromised immune system.  Dr. Claxton, John's oncologist, said there are a few patients that do have this happen, though.  They end up with a very weakened, almost non-existent immune system.  And it can continue for several years after the bone marrow transplant.  But the oncologists don't know the reason why their patients can't maintain a normal immune system.  Remember, this is important because the patient without an immune system is more likely to catch an illness, and then has a harder time fighting it off, which can be a life threatening matter.

So hopefully we will get some answers and maybe John will get some treatment.  Maybe while John is down here he can see the infectious disease specialist also.  John went to him a few months back. He gave several explanations, or possibilities, of what it could be that was causing the problem of the low white blood count and low ANC.  But he wasn't sure.  We were not too thrilled with any of the possibilities.  They were frightening.  I won't rehash all of that, b/c they were only possibilities, and no reason getting scared if they are not definite right now.  If anything pans out I'll let you know.

I was also reading yesterday on the web about what causes Autoimmune Hemolytic Anemia.  Rembember that?  John was getting seven bags of bood a day.  Then a little less, but constant bags of blood a day or every day.  So many of you were giving blood because of him, and I was so touched I was in tears really, and so was he.  Shhh, don't tell him I told you, LOL, b/c men don't tear up, now do they, LOL?  

Anyway, the causes for Autoimmune Hemolytic Anemia were listed as: viral infections, lymphoma, and certain drugs (not street drugs, LOL).  John had all of those before his he got the AIHA.  He is going to mention this to Dr. Claxton.  Only b/c he wants to make sure his lymphoma is not coming back.  The lymphoma he had before he had the bone marrow cancer.  Some of you don't know this, but John has had two cancers in his lifetime.  Perhaps it is really ridiculous to be concerned that the lymphoma could make a comeback, but when you have had the big "C" you get a little concerned sometimes.  But we are not counting on anything like that.  So please don't worry.     

John also wants to discuss the fact with Dr. Claxton that he had a viral infection right before the AIHA.  Maybe it is the viral infection that is keeping John's immune system down.  I don't know if he does have a viral infection if there is anything the doctors will be able to do for him to help his immune system anyway, except artificially stimulate it.  Does anybody know?  Help me out here Guido or Pam!  Can you answer this one?  Or is there nothing you can do with a viral infection?

Oh gee, it could have been anything.  He was taking three of the meds the medical article on the web said not to take before he got the AIHA.  And still still continues to take them.  Don't the doctors know he is not supposed to?  Sigh.  I guess we better tell them tomorrow at the appointment.  I guess I better print the medical article out tonight.  I think it was from a medical paper or a journal or something, it looked legit.

Okay, this has gotten more medical than I had planned.  I meant to talk about the ice storm, LOL.  The lights almost went out a minute ago.  The whole thing made a surging sound.  I grabbed John's arm.  I don't want the power to go out.  It will be freezing, and the food will spoiling.  Maybe we will have no water.  I think power is going out all around the East Coast.  It is horrible.  On the other hand, it is beautiful.  But branches are falling off the trees.  A car almost got hit in the parking lot from the biggest branch I have ever seen fall off of a tree in my life.  A very near miss.  Two giant, I mean giant portions of trees, no three, have fallen to the ground, already.

If it stops sleeting, and the ground isn't too slippery, maybe I can go out and snap a few pictures.  We'll see. 

Okay, gotta run.  John is getting bored, LOL.

Love you lots and lots,  Krissy :)  

Thursday, December 13, 2007

John is having trouble w/ his immune system again

Hi.  Brrrr, it's chilly this morning.  And I am up too early.  Well, it's not that early, it's 7:24, but I'm tired for some reason.  And I've got too much to do today to go back to bed.  For one thing, I need to get fitted for bifocals.  I don't know if the lenses will be able to go into my current frames, or if I will  have to get new ones.  Either way, I am feeling old, LOL, and I am not yet 45.  Oh well.

I need to tell you all how John is doing.  I'm sorry I waited this long.  I was waiting to get results from tests he took this week so I could give you an accurate answer. 

First let me say that a lot of it is good.  His bacterial infection (sepsis) is completely gone.  He has a very high hemoglobin and hematicrit count.  Don't get scared off by the terms.  That just means he has enough energy because he got that blood transfusion.  He is finally in the normal range and has enough blood!  He hasn't been in the normal range in months and months, as far as having enough blood, or oxygen in his blood.  So we are excited.

His Creatinin level (this determines kidney function) is holding real well!  Still not great, but not at the level of needing to be dialyzed yet.  His bilirubin level is good, which means he does not have Hemalytic Anemia, which he used to have all the time.  Remember those blood transfusions he used to get all the time?  Sometimes as many as seven bags of blood (red blood cell packs) a day?  Every day?  Well, he doesn't have that problem at present.

Okay, now the problems.  While the platelets have come up, they are still too low.  The count is 90.  Normal is 150.  He told me he will NOT stop using his manual razor even though he could cut himself.  I didn't think he would stop.  There is no point in me hiding it, he would just ask for it back.  I believe him.  Or maybe he would go buy another one.  Hmmmmm.  Stubborn.  Then he made a good point.  The electric razor gives him razor burn, which could give him an infection because his white blood cells and ANC are low.  While a razor could cut him, it may not leave as bad an infection as the electric razor which just tears his neck up and makes him raw.  It is all a weighing game.  Which is worse, having a clotting problem or getting an infection?  Because platelets being at 90, he probably would clot anyway.  Probably.

I don't know if that last paragraph made sense to you, LOL.  All this medical stuff gets complicated.  I hope you are not bored and are still reading!

Finally, one more problem.  This is the bad part.  John's white blood cells and ANC are plummeting.  This is frightening to us.  They are doing it very quickly.  The doctors have no explanation for this. 

Recently he received three shots that made his immune system soar.  Above normal.  He should be doing really well.  He dropped down very quickly.  He just may be neutropenic by his next test on Monday, he dropped so very drastically. 

We are concerned about this for two reasons.  We wonder why it is happening.  Dr. Claxton in Hershey doesn't know.  The other reason we are concerned is he could get very sick again if he doesn't have an immune system.

So that is how he is doing.

So how am I doing?  Things have been really rough for me.  A lot has happened in the last two or three months that have been a real challenge.  I mean I am fine, but I am exhausted.  I just want a break - time to do some fun things.  I am looking forward to Christmas and spending time with John and my family, and not worrying about things I have worried about. 

I hope you all are having a great Advent season and time getting ready for Christmas.  This is truly a beautiful season!

Thank you all who have asked how John was doing.  Next time I will try to get an entry in sooner, as soon as John's tests are done.

Love you all, Krissy


Monday, December 10, 2007

monday morning question


If you had to be one of the following, for 8 hours a day, during the week before Chrismtas, which would you choose?  You cannot say none of these.  Please choose one of the following employments to earn extra cash before Christmas:


Santa in a department store (kids sit on your lap)

elf who leads the children up to Santa

gift wrapper

cashier in the busiest part of the department store

Salvation Army bell ringer outside of a snowy store 


My answer: The elf.  Why?  I'm not a man, so I'm not being Santa.  I'm not going to wrap 1,000 presents.  I'm not going to wait on 1,000 customers.  And I am not going to ring that bell 1,000, I mean one million times in the freezing cold!  

So it looks like I'll do the easiest thing.  Be an elf.  And organize 1,000 kids, LOL.  Can't be as hard, right?

Tuesday, December 4, 2007

the healing power of pets

Perhaps you will think Krissy is crazy after this entry.  Just wanted to know what you all thought!

I have something called Restless Leg Syndrome (RLS).  It causes a creepy crawly feeling up and down my leg. When it gets bad, in my case, it also causes the muscles to spasm then tighten up.  It is so severe that it can leave me screaming.  These "charley horses" cause me pain for days after they occur.  They also leave me vulnerable for additional ones to occur.  I guess it's just the RLS.  I can have a sudden Charley Horse anywhere in either leg at any time without warning.

That's what happened to me yesterday when I was on the phone talking to my niece Chelsea.  I got a sudden Charley Horse.  I must be a baby, because it was gripping me over and over, and I screamed, and threw the cordless phone across the room, LOL.  I am laughing because I feel like such a baby.  When I regained compusure, and John returned the phone to me, I asked Chelsea if she ever got charley horses, and she said when she was pregnant.  I asked her if she ever screamed, and she, to make me feel better, said, "Well sure, I wanted to scream!".  I felt so stupid and immature, LOL.  She is half my age, and braver I guess.

Anyway, here is the part where you might think Krissy is a little crazy, LOL.

After I got in bed last night, I called for Michael, my cat.  I asked him to snuggle with me.  He really does know a lot of English, LOL.  I said, "lay by Mommy, so we don't be cold."  That is his phrase to snuggle his body against me so we give each other body heat, LOL.  He went up and down my legs, and then settled in one spot.  To my surprise, it was the exact spot of my pulled muscle!

I believe my cat is a healing cat, and that is the part where you all might think I am crazy.  I woke up five hours later, and he was still there in the exact same place!  He hadn't moved.  How did he know where I hurt?

I got up and went out into the living room, even though it wasn't time to get up yet.  John was out there, and I wanted to know why he was up.  All of the sudden another cramp wrenched my leg.  I ran over tothe wall and gritted my teeth and started to do exercises against the wall I knew would help my leg.  This time I tried not to be so loud.  Just a low moan, LOL.

Kitty ran over to me and stood by me and wouldn't move.

I worked the out the cramp best I could.  John and I went back to bed.  Kitty followed.  Michael jumped onto the bed.  He lay down next to the second cramp this time!  When I awoke in the morning he was still there!

Now tell me, how does he know where I hurt?

Krissy :)

Monday, December 3, 2007

monday morning question


What do you want for Christmas?  No fair saying something like "peace on earth" or something like that.  You must name something tangible (something you can touch) that would go to you alone. 

I know you may not get this thing, just name something, this is just for fun!

My answer: 

I want a pair of Mary Jane Crocs.  It is too cold and snowy where I live to wear them until the Spring, but that is what I want.  Oh, what is a "croc" you may ask?  Those "plastic shoes" everybody is running around in.  But I loved them about a year before they were known or cool!  I didn't get to get them at the time though, and want them now, LOL.   

I also want a PSP program so I can tag graphics (sorry, if you don't know what that is I can't really explain it to you!).  I have a friend who is giving me that for Christmas.  I am so excited.  

That's all I want.  Unless somebody wants to give me clothes and jewelry, LOL.  :)

Krissy :)

    Aren't these cute?


Now tell us:  What do you want for Christmas?

Sunday, December 2, 2007

John is home and doing well!

John's doing well.  He's home now, has been for a couple of days. 

His fever broke.  When they sent him home, they told him to come back if it gets 100.5 or higher, but it doesn't look like it is going to.  It looks like the infection is gone.

He is on oral antibiotics.  A couple of them.  The hospital considered putting in a picc line (port) in his arm and having me do IV antibiotics at home.  Thank God they decided against that!  Yes, I know I did it last year, and yes, it's not that hard, but I just don't feel up to it, LOL.

At any rate, thank God, he is looking quite well!  He is even up and around some.  He still has to rest a lot, but is doing things also!  Imagine that.

One of the reasons he feels so good is that before he left the hospital they gave him his blood.  How the blood got there so quickly I have no idea.

Now there are just a few more issues to deal with.

One is John's immune system.  While his immune system is doing very well, it was artificially stimulated to be that way with three injections in the past two weeks.  One Neulasta shot and two Neupogen shots.

The second issue he must deal with is his platelets are very low.  If they get too much lower there is the possibility that he would have to have a platelet transfusion.  Also, if you have low plateles, you risk not being able to clot if you cut yourself.  So he is not allowed to shave with a real razor.  I caught the guy doing it yesterday though.  I could have KILLED him.  He told me he could not use only his electric razor because it gave his neck red burns.  I told him not to shave then.  He said people would be scared of him if he was unshaven, and he would look like wild man.  I said, who cares, better to have you alive and looking like wild man, then dead.  I stand by my opinion!

So that's about it.  He is really doing great, praise God, for the guy I saw Saturday night, whose body was shutting down, with 104.5 fever, who we didn't know was going to make it.     

This guy don't quit.

Love, Krissy :)

this one's about me!

Hi you all.  Sorry it took so long to get back to writing an entry.  I feel bad because I didn't want to leave you all hanging.  But what happened was, after John was discharged from the hospital the other day, my body just didn't allow me to do a whole lot for a couple of days.  I couldn't even muster the strength to do an entry.   

I didn't realize that the week John was in the hospital I was running on pure adrelalin, going and going because I had to.  When John was finally discharged, I woke up the next day, and I felt so exhausted I wanted to sleep for a week.  I also had the beginnings of bronchitis, but that appears to be gone now. 

I guess it is like when you summon everything to get through something, and then when you don't need to be alert for that anymore, you tell your body it can let go and work on itself now.  Gee, I didn't realize my own body needed taking care of as well as John's.  So what's new about that, LOL.

At any rate, I am feeling better now.  I have taken cat naps over the past few days, and I slept beautifully last night.  I have enjoyed John's company and feel at peace.  And I have my kitty back! 

I watched the snow fall outside my window last night.  We have a Christmas tree (artificial, my favorite!) now and are going to set it up soon!  Wait till you see what it looks like! 

We had the cable installed in our apartment and can now watch TV (we had not watched for a couple of months, LOL).  John and I like to drink hot drinks (I drink tea and John drinks coffee) while watching the news.  I am going to see if I can find any Claymation Christmas specials on this month!  Or any of the classics.  Yes, I am at peace, and am feeling good now.

Okay, so like, this entry started out to be about John.  Now I have to go do one about him, LOL.  

Love you all,

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