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 :)


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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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Thursday, November 29, 2007

John's being discharged today

Good morning.  Just a quick entry before I am off to the hospital.  Today is actually discharge day!  They are releasing John because his fever is gone.  He can't walk much yet.  But yesterday he walked a little bit down the hall, actually one lap around the little circle.

I'm so glad his fever is gone and he is able to come home, but I'm a little nervous.  Just yesterday I wanted him recultured, because the night before he couldn't walk even one step in the hall, and I was wondering why he was so ill.  But it does look like he is improving now.

I am, however, really scared that his hemoglobin is so low, and his numbers are steadily falling.  When I pointed out to his doctor/ oncologist the low number in his labs, he ordered blood for John.  That was at my urging though.  It really scares me that the doctor didn't notice on his own.  Actually, the first time I pointed it out to him (day before last), he said he would order blood and he never did.  Yesterday I called Dr. Claxton's nurse, Mitzi, in Hershey.  I told her the situation.  She said that instead of John coming to Hershey Medical Center, that the local oncologist should order the blood for John right away.  I had to argue with the local nurse a little bit, but she finally took care of having the doctor order the blood.  Such nonsense.  She knows it takes three days for the blood to get to the hospital because John's type is so rare.  She kept saying, but what if it so happens that he just DOESN'T need it?  I said, but what if he DOES?   

The blood will take three days to come in.  John will get it here at the local hospital he has been in.  They will readmit him to the hospital for one day to give him the blood.

Seems kind of strange to me that they are not keeping him since his count is so low, but whatever.  I will keep him on my couch in the living room, LOL.  Sounds good to me.  I can keep a good eye on him.  I will make him homemade soup.  When he feels stronger (and that may not happen before he gets blood) he can practice little walks around the apartment.   

I am so excited!  To have him back.  Praise God he is with me this year, in time for Christmas.  It will be a good one!  I am thinking of putting up a tree now!  And I will get my kitty back even!  

Hope your week is going as well.  Now off to the hospital to get John!

Love,  Krissy

                       

Tuesday, November 27, 2007

John has sepsis

Hi you all.  I hope everyone's doing okay, and beginning to enjoy the holiday season.  Is it beginning to start feeling Christmasy yet to you?  Here everything is decorated.  Even the hospital is decked out in pretty Christmas trees with all sorts of bulbs. 

So I guess I should give you an update on John. 

I found out yesterday that he has sepsis.  That's a bacterial infection in the blood.  He has something called Gram Negative.  He probably has additional blood infections, but they are trying to figure out what they are.  It takes one to three days to get results back from a culture.  

The nurse told us that they hadn't expected him to live probably.  She told us because John asked her and wanted to know.  He then asked her if he was out of the woods, and she said not necessarily, but that they were giving him four antibiotics (three through IV and one orally) and that he had a good chance of making it.

Yesterday his fever came down (from being between 102.4 and 104.5 for days), so I asked the nurse last night if that meant he had turned the corner finally.  She stated that she didn't know.  So I am not really sure how he is doing.  But he is better than he was doing before, when he was just about unresponsive.  Now he can talk, and get up and go to the bathroom, although he needs some assistance some of the time.

The reason I am at home instead of at the hospital is because I come home nights because I need my CPAP machine.  It is vital that I wear it every night.  In the morning I go back to the hospital.  I prayed about it last night, and felt enough peace to leave the hospital, so I came home.

I also needed a break, they have me working some of the machines for the nurse, LOL, because they don't have enough staff I guess.  It is really insane and I get tired. 

I didn't want to leave because I asked John what the nurses would do if I wasn't there?  His machines would ding ding ding for an hour (because he is behind double doors and they can't hear the machines dinging so they can answer them when something is wrong).  

John told me he would just press the call button and tell the nurses his machines were dinging, and ask them to come stop them from dinging, and to fix the comparable problem that caused the dinging.  I told him that was all good and well, but what if he was asleep during the night, and didn't hear it?  He could have a problem with his IV port (or whatever it is called), or his things on his legs that prevent blood clots.  Or the machine that records blood pressure.  Arggghhhh.  Why would they wait an hour before checking up on him anyway?  Some shift nurses are better than others.  Some seem to wait longer than an hour to check on him.

At any rate, the oncologist was thinking of having John transferred to Hershey Medical Center by ambulance yesterday.  Then he changed his mind.  Now he is not sure.  We will see what happens.  One of the problems is John is getting close, very close, to needing blood again.  If he does need it, locally it will take three days to get it.  He won't have the time.  I asked them to order the blood yesterday, so they will have it when he needs it.  The nurse said they wouldn't in case John didn't need it.  If he doesn't need it, and doesn't use it, they would have to spill it, and it wouldn't be able to go to somebody else.  So they don't like to order the red blood cells unless it is imperative.

Well I will tell you what.  If they are wrong, and he DOES end up needing blood, he won't be able to get it in time.  He will go down hill VERY quickly.  I am frustrated by this.  I think they will have to send him to Hershey right away by ambulance or life flight.  The reason is because they can get blood the same day there, usually in about four hours.  In my small town it takes three days, LOL.  Actually it is not really funny.  So I am praying he doesn't need blood.

Okay, this is getting too long.  There are a lot of things I am probably leaving out, but I can't remember what they are.  I am feeling tired this morning, even though I slept. 

Oh, I haven't really told you how I feel yet.  Still worried, but WAY more peaceful.  Sometimes as I sit in the hospital chair I feel like I am fighting depression though - that it is trying to wash over me in waves.  But I fight it off, and it doesn't last for more than an hour usually.  I also feel exhausted because I have a lot of responsibility.  But I am with John 12 hours a day, at least, and will not leave his side, during those hours, except to get food.  I will have it no other way.  I am not going to stay away.  Well this morning I do have to come in late.  I need to get a prescription filled.  In case I end up going to Hershey in a day or two.

I am missing my cat terribly.  My parents took him, which was more than wonderful.  At night when I start to cry, reaching out for John and he is not there, I look for kitty to snuggle up with.  Then I realize he is not there either.  So I decide to be brave and not cry.  Besides, they are both in good hands.  And so am I.  God will take care of me.

Now this has gotten to long, and I need to get ready to go to the hospital. 

Love you all,

Krissy :)  

Sunday, November 25, 2007

john has been having fevers between 103 and 104

Hi.  Just a quick update.  John is at the local hospital.  It's not as good as his cancer/ bone marrow transplant center (Hershey Medical Center), but the quality of care seems to be pretty adequate at this local hospital.  We came into the Emergency Room there this morning when John had a fever of over 103.  The oncologists at both hospitals conferred and had a difficult time deciding which hospital to admit him into.  Finally it was decided that he was not stable enough to travel the two and a half hour ride to the better hospital, and that they would keep him local, and transfer him to Hershey if he took a sudden downhill dive.

I was pleased when John was admitted finally, and we found his nurse was somebody who had been following his case for years at another office, the office of his local oncologist.  Sara will be his nurse for over eight hours a day.  She knows a lot about bone marrow transplants and cancer so I feel so much better.  She also knows about John's kidney damage, that he was on dialysis, about neutropenia precautions, about when he should get blood, how he used to get seven bags of blood a day (red blood cell packs) and how to tell when he needs more, etc...  She is very up on his case and on hematology/oncology in general. 

So, how is John doing?  He hung between 103 and 104 degrees all day.  This was while they were filling him full of Tylenol.  They were very worried about him.  Finally later on tonight his fever came down some.  I can't remember how much, but some.

What's going on is this.  His ANC (absolute neutrophil count) is 0.06.  Like nothing.  So he finally caught a bacterial infection.  They are trying to find out which one.  Meanwhile, they are filling him full of fluids by way of IV pump and also giving him an IV antibiotic.  It is a broad spectrum one and should work on a lot of different bacterial infections.  Cultures were taken, and they take one to three days to grow.  After the results come back, then a different IV antibiotic will be given, one that is spefic to his particular bacterial infection.  He will either have the antibiotics switched, or be on two IV antibiotics. 

The last time this happened, if everything goes smoothly, he will be out of the hospital in a week.  That is usually the best case scenario. 

The reason I am home is because the hospital asked me to come home and get his eye drops and his Living Will.  I also had to get myself a diabetes shot, and one for Michael.  My parents then took Michael, bless their hearts, so I could spend more time with John.  If anything ever happened to John, I don't want not to have gotten the chance to say goodbye because I was home feeding the cat or giving him a shot.

So I am going back first thing in the morning.  Actually in a few hours.  I have not slept a lot tonight.  Yes, I do trust in the Lord, but I am a little scared.  I used to be pretty used to this, but when you haven't been through it in awhile, it's hard.  But I do feel relieved that he was doing a little bit better.  Earlier in the day he was so sick he couldn't talk, respond, or open his eyes. 

Okay, please pray for him.  And pray for me that I relax and try to sleep when I can.  And eat correctly.  I can't let myself get sick.

Alright, love you all.  If you don't hear from me in awhile, it means I can't get away from the hospital.  Then I'll give my password to my sister Val and let her update in this journal.

Love,

Krissy 

Saturday, November 24, 2007

John is off to the hospital

I'm a little scared.  John has a fever of 102.6.  And he has almost no immune system.  His ANC is 0.4.  That is just about 0.  Which means, well, he needs antibiotics before he, uhm, like, dies.  So I am only on here to ask you to pray.  We are heading to the hospital right now.  We're going local, and if the treatment there isn't enough for him, then he'll be transferred to Hershey Medical Center.  If it is enough locally, then he will be treated and released to home.  We will see what happens.

So please pray.  I will come back as soon as I can to update.  

Love you all, 

Krissy

Friday, November 23, 2007

the meaning of the term Black Friday

Several of you have asked me why the name "Black Friday", as if the name were something dreay or dreadful.  Actually Black Friday is a term coined by retailers, and it is the day of the year that retailers usually finally move from being in the red (losses) to being in the black (profits).  So it is a good thing for retailers.  They are now making more money than they owe.

Black Friday, for retailers, is also an indicator of how Christmas sales will be for the year.  Here in America, there is some growth this year, but not as much as last year.  One of the reasons that there is not expected to be as much growth this Christmas season is because Thanksgiving began late this year, leaving less shopping days before Christmas.  This has some retailers worried.   

Some people mistakenly think that Black Friday is the busiest shopping day of the year.  In actuality, it is about the fifth busiest.  The busiest shopping days of the year are the two weekends before Christmas. 

By the way, the most popular gift that people are choosing to get for others this year for Christmas?

Clothing.

                    

 

How do you spend your Black Friday?

Thanksgiving was great.  As I sit here at two am typing this up, I think back on the day.  There was great food (if I do say so myself, LOL), great friends, and a generally good time.  After we all ate we switched to some  important talk. 

Then suddenly one of them (Jennifer) asked where the ads for Black Friday were.  I told her to feel free to check our  newspaper.  Next thing you know, I was sprawled out on the couch (too much triptophan) and she was sprawled out on the living room floor with all the newspaper ads around her.  She asked for stickies (post it notes) to flag in the newspaper those items she was going to purchase.  She had planned on two stores already, that she was going to go to on Black Friday.

Shirley, John and my other friend, decided on another store she would go to.

Was I hearing correctly?

Shirley had just gotten done saying that last year, her son went to the local Best Buy (less than a mile from John and my home) at 4 am. on Black Friday.  When he got there at 4 am, there was already a line that was four blocks long.  But he got in the line anyway.  It was worth it to him, he says, because he was in the beginning of the line, and he ended up getting what he wanted for a good price.  But he did say however the wait was very long and he got very cold waiting in line.  But, he says, it was still worth it.  He could handle the four blocks and waiting hours and hours in the cold for the store to open.   

*Shuddering, and shaking my head here.* 

I feel sorry for my friends.  I am going to be home under the blankets tomorrow, watching TV, sipping tea and eating leftovers, and doing nothing but spending time with John, as is fitting for the day after Thanksgiving!

I'm just wondering, how do you spend your Black Friday?

                 

Wednesday, November 21, 2007

Happy Thanksgiving!

          

Happy Thanksgiving to you all!  And to you in the UK, may you have a blessed day also! 

I have so much to be thankful for this year.  John is at home and making a lot of progress physically.  I have a wonderful extended family and a wonderful life with John and my kitty.  I've got you all as friends.  I love my new home.  There are so many blessings I can't name them all.  The most important is my relationship with the Lord.

Now let me bring you some true facts!

              Turkey Fun Facts 

You say it one way, I say it another...

In English turkeys say "Gobble, Gobble, Gobble".  In Portuguese they say "Glug Lug Lug Lug Lug ..."

How the Turkey Got Its Name

There are a number of explanations for the origin of the name of Thanksgiving's favorite dinner guest. Some believe Christopher Columbus thought that the land he discovered was connected to India, and believed the bird he discovered (the turkey) was a type of peacock. He therefore called it 'tuka,' which is 'peacock' in Tamil, an Indian language.  Though the turkey is actually a type of pheasant, one can't blame the explorer for trying.

The Native American name for turkey is 'firkee'; some say this is how turkeys got their name.

Another possibility could be this.  When a turkey is scared, it makes a "turk, turk, turk" noise.

Fight Over the National Bird  

  

At one time, the turkey and the bald eagle were both considered as the national bird of America. Benjamin Franklin was one of those who argued that the turkey should be the national bird. Franklin felt the turkey, although "vain and silly", was a better choice than the bald eagle, whom he felt was "a coward".  

I hope you enjoyed these facts.  Now get back in the kitchen and cook!  Or if you're done, eat!

Love,

Krissy :)

Michael

             

 

Monday, November 19, 2007

monday morning question

         

What would you say are the three strangest items in your refrigerator right now?

My answer: 

marinated artichoke hearts

Nepro (a dietary supplement drink for people with kidney damage)

a bottle of Acidophilus capsules (that one is for John's health too, I am not exactly sure for what, LOL)  

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Sunday, November 18, 2007

this snow stuff isn't so bad

I am sitting here next to my bedroom window, watching as beautiful snow wafts down to the ground, in swirling patterns.  Actually, it's not really wafting, it's coming down pretty hard.  The ground looks like it is being sprinkled with confectioner's sugar, and the trees, especially the evergreen, look pretty with their dusting of snow.  Actually, it's coming down harder now, the roads are getting covered.  I look over at John.

"This is disgusting" John chortled.  "I don't care if it is pretty or not.  It's still a mess!"  I asked him why he cared if it were a mess, as if he had somewhere to go this morning.  He's not going to church today because his immune system isn't strong enough.  If he wanted to, he could curl up under the blankets and read books all day.  So I asked him what the problem was.  "I don't like snow.  It's sloppy, it's messy, it's slippery. It's a mess."

I think he better get an attitude adjustment real quick, LOL, or this is going to be a loonggggggg winter.  Oh, did I say winter?  Winter starts here in November and doesn't end sometimes until some time in April.  That's one of the perks of living here.

I, unlike John, am actually starting to adjust to the cold and the winter weather.  I didn't mind coming home last night in a little bit of snow, enough that John had to get out the snow brush/ice scraper and brush the car off before we could take off.  As we drove home in the snow, with the Christmas lights lighting up the town, I felt the excitement of the new season.  I'm starting to adjust to this colder season.  I think I can make it through the next four or five months now...  


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Thursday, November 15, 2007

describe me in one word

WHY NOT!!!!!!

The Game is on!!! And you're IT!

Describe ME in one word.....just one single word. Post it in my comment section. Then put the same request in your journal so we can visit you… and do the same thing… and see how many strange and interesting things they say about you.

Come on you know you wanna play, lol. Leave your link so I can come see.

Krissy

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orange cranberry sauce

I wanted to share this recipe.  I got it from Monponsett about a week ago.  I made it with supper the other night and it's incredible.  John loved it.  Then I made it again (doubling the recipe) and took it to a Thanksgiving party.  It was a hit, and the only cranberry sauce that was gone by the time the party was over! 

Here's the recipe: 

1/2 cup orange marmalade 
2 tablespoons grated orange rind 
1 cup fresh orange juice (about 2 oranges) 
1/2 to 3/4 cup sugar (to taste) 
1 (12-ounce) package fresh cranberries (I use Ocean Spray) 

 

1.  Combine marmalade and orange rind and set aside. 

2. Combine juice and sugar in a medium saucepan; bring to a boil.

3.  Wash cranberries in a colander.  Add cranberries to juice and sugar mixture; return to a boil.

4.  Reduce heat; simmer for 10 minutes or until cranberries pop and sauce begins to thicken.

5.  Remove from heat; stir in marmalade mixture.

6.  Cover and chill.

What I did:  I left out the orange rind (don't hit me Monponset, LOL).  I also added ground cloves.  I can't tell you how much, I just sprinkled some in there.  I think the original recipe called for it anyway.  Just be careful, if you are going to use ground cloves in it go lightly, it is strong!  You don't want to overpower the orange cranberry sauce!

Consider making this on Thanksgiving, it's good!

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Wednesday, November 14, 2007

how do you feel about the title cancer survivor?

Here I am again, waiting about five days to write an entry.  I better hurry, I have someone coming over in fifteen minutes.

I hope my fonts aren't messed up again when I post.  That last entry was crazy.  The whole thing was supposed to be comic sans 14, LOL.  The whole thing messed up when I posted.  I am troubleshooting, and nothing is working.

At any rate, I have been so busy, I forgot to ask the Monday Morning Question this week.  I remember leaving it for this particular week as it was something real important that I wanted us all to consider.  Oh well.  I guess it couldn't have been too important though, because I can't remember what it was, LOL.  If I remember I'll ask it next week!

So, I have been extremely busy as always.  But the past two days I have taken out a little time for fun.  Last night I went to a writing workshop on freelance writing.  I found it more than fascinating.  There is a writer's group that meets in my town once a month to learn about writing and to network.  I think I will attend it.  There are even job leads.  I don't know if I want to do writing for a living in the future, but you never know. 

Another thing that I did that was a nice break was go to a Thanksgiving dinner.  Yes, our cancer association had ours early, LOL.  I am laughing because it is way too early but we did it anyway.  We had wonderful music.  We also honored Judy, the founder of the organization.  She passed away from cancer a few months ago.  It was hard but we got through it.

That reminds me of something.  The local cancer group leader was discussing with us the other day at our meeting that perhaps she didn't like the name of our group.  It has the words "cancer survivor" in it.  She said, some with cancer die, therefore they are NOT cancer survivors.  I was horrified.  How ludicrous.  That is not how I look at it at all.  Then I thought about it.  She is on the cancer board, and wants to help with cancer related issues, but she has a different outlook than most of the group members on LOTS of things from the rest of the  group.  This is because she has never had cancer, nor has she been a caregiver.  She doesn't know what it's like.

She was telling the board that we should really consider changing the name of our group (Cancer Survivors), as if those who have died are NOT cancer survivors.  That it is wrong to those with a terminal diagnosis, or those who are simply not sure if they will live, to call them survivors at any point in their illness.  To be hoenst, I was shocked, and kind of hurt.  First of all, who is to say who lives?  Secondly, who is to say what value that life has?  Thirdly, they are survivors in heaven.  That is what I believe.  They have always had that title, do NOT TAKE It away.

I asked John what he thought about the title Cancer Survivor.  By the way, John was told that there was NO WAY on earth that he could possibly survive when he was first diagnosed with cancer.  He was told this from his first cancer, when he had lymphoma, nine years ago.  He was told that the chemo would buy him five years, but that was it.  When he found out that he was a CANCER SURVIVOR, he said it brought him real hope!  He loved the title!  He was like, I won't die, here's pie in your eye!  Or at least I have a chance!  He said it gave him real hope!  And if he died, at least he had a title!  So there!

So I just wanted to know, you out there who are cancer survivors, and who are reading this, do you like the title?  How do you feel about it?       

And those of you who aren't cancer survivors, you can answer too.  Just curious.  What do you think of the title cancer survivor?  I'd like to know.  Maybe I'll pass the information on to her.  Without showing her the entry or names, of course.  Just a vote count.  Thanks.

Krissy 

11/14/07 12:25 pm  Edit:  OK, so somebody corrected me.  And was right.  You all aren't cancer survivors.  That's not the right term.  You're Survivors.  Sorry.

Krissy :)

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Sunday, November 11, 2007

Veterans Day

                  Today we celebrate Veterans Day

                    
                Veterans, we won't forget you.

Would you like to reach out to a vet today?  Here are some things you could do: 
 
1.  Thank a vet.  (Could be family member, friend, etc.) 
 
2.  Go to a parade if there is one near you, and thank or wave to a vet.
 
3.  Pray for a vet today.
 
4.  Send a postcard to military personnel to show your support.  Just email in your information and a paper postcard will be mailed to a serviceperson.  To find out more about this, go to
 
                                     Let's Say Thanks
 
5.  If you are a vet or a serviceman, wear your military uniform to church on Veteran's Day if your pastor asks you to, so he can recognize you in front of the congregation.
 
6.  If you are a vet or a serviceman, wear your military medals on Veteran's Day..  To find out more about this project, click here:
 
                                       Veterans Pride
 
7..  If you have a serviceperson or veteran in your family, you may seriously want to consider getting involved in trying to help pass legislation that would benefit the vet you love.  Here are some issues that are of concern to servicepersons and/or veterans:
 
Advocate for health insurance for those vets who do not have it, and better insurance for those who do.  Things to advocate for:  The 2007 Legislature passed several bills, including: increased funding to the Veterans Home Board for providing personal care and building maintenance; financial assistance for higher education through the GI Bill; allowing those called to active duty to cancel service contracts (cell phone, health and fitness club membership, satellite television subscriptions and rental contracts) without penalty, and ensures that their energy stays on; funding for the National Guard Reintegration Program; funding for veteran health screening; funding for marketing veteran outreach programs; and free hunting licenses for soldiers returning from overseas in the past two years.
 
8.  Finally, here's something simple you can do.  This one's big where I live.  Just tie a yellow ribbon 'round the ol' oak tree.  Do it in support of the troops.  No matter how you feel about the war, the troops deserve to be supported.  When they come home, they deserve to be welcomed by us. 
 
             Take care and remember to honor your vet today!
 
               Love, Krissy

Friday, November 9, 2007

it's snowing

Michael, my cat, just tapped on the blinds in my bedroom.  That's what he does when he wants me to raise them, so he can look outside.  So I raised the blinds, and went back and sat down at my computer.  Michael likes to watch the birds outside the window, and the bird feeder is right outside the window.

That's when John called me to look outside.  "It's snowing!" he gasped.  I couldn't believe it.  I know it's cold in Central PA, but sheesh!

Sometimes I wonder if I am going to make it through this winter, and it is only November, LOL.  This year so far it has been particularly hard.  So cold, and I am not getting acclimated.  Usually, other years, the cold comes slowly and I get used to it.  This year, every day, I am just chilled to the bone.  I hope I will be able to adjust soon.  It doesn't matter how warm I bundle.

And now snow! 

Krissy :)

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Wednesday, November 7, 2007

it's beginning to look a lot like Christmas!

It was about a week ago when I first drove down my street (actually it was John driving) and I noticed all the Christmas lights lining the streets of my apartment complex.  The apartment owners had strung the trees with glowing lights.  I was taken aback.  The first week of November, and Christmas lights already?

Since then I have seen them all around the apartment complex.  Individual tennants have "gotten into the Christmas spirit" and hung their Christmas decorations also.  I have gone downtown, and seen them on houses there also.

I'm a little perplexed.  It's still a couple of weeks before Thanksgiving!  When I was growing up, you didn't do Christmas until after Thanksgiving.  At first it was much after.  And then it was the day after.  Now it's before! 

Another thing that's a little funny about my town.  After decorating for Christmas, we leave the Christmas lights up until April or May.  Even June!  Now that part I like!  It makes everybody a little more festive and nicer to each other, LOL!  

So how is it done where you live?  Are your Christmas lights and decorations already up in your town?  And if so, do you think it is too early?  As for me, it's way too early.  I plan on enjoying Thanksgiving first! 

                        

Monday, November 5, 2007

monday morning question

       

Our question this morning comes from Kathy of A Little Left of Center II.  She will soon create  her family Christmas newsletter and wants to know if it is worth it.      

Kathy's question is:

I am getting ready to write my Christmas Newsletter and I was wondering:   "What Do People Think About Christmas Newsletters?"    Do they read them?  Toss them?  Think they are braggy?  Boring?
 
My answer is:
 
I love Christmas newsletters!  I do read them, and I don't think they are boring, nor are they like a form letter to me.  How could your family be boring?  And no they are not braggy.  And what if they are, LOL?  Go ahead, brag about your family!  Krissy :)
 
You're turn, what's your answer?
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