Ups and Downs

Wow, what a difference a day makes.  When I called John up Saturday morning, the day after the transplant, he told me he had showered and eaten.  His voice sounded so energized and full of life.  He sounded almost like a different person than the day before.  I rushed over to the hospital, because he said the doctor would be in shortly to talk with us.  I was very surprised when I walked in to see him sitting up in the recliner reading a newspaper!  Yes, they said he would be weak and resting for several months, but he was doing so much better than the day before. 

I looked at the chart to check out his counts (his labwork).  His white blood count (WBC) was only 0.3.  John said the nurse had told him he was "severely neutropenic".  She also said the white cell count would fall even lower over the next few days.  Then it will probably start coming up in 10 days to 2 weeks.  

Being severely neutropenic means John can catch an infection at any time.  That is why he has to wear the mask all the time, except in the day hospital.  The nurses ended up telling him he ought to wear the mask at Hope Lodge also, until his white count comes up, which should be about two weeks.  

Anyway, John was doing so fantastic, that they discharged him from the hospital on Saturday!  He was able to leave, and he had lots of energy and a lot of color to his face.  They almost didn't discharge him, because of an insurance issue (where the insurance co. is denying him two meds that they promised they would pay), but the docs decided to let John out, and try to deal with the med/insurance issue on Monday.  I hope it gets dealt with, or John might be readmitted to the hospital on Monday again, because he won't have his medication.  

Now that was the up day.  Today (Sunday) was the down day.  John woke up exhausted.  The color in his face was gone and he was extremely fatigued.  We went to "day hospital" and they did some labwork.  The found out his WBC was 0.2.  His red blood cell count was pretty low, and his platelets were extremely low.  So he had to have a platelet transfusion.

He was concerned about having the transfusion because he thought he would have the shaking reaction again but they gave him a large dose of benadryl, and he breezed through his first ever transfusion.

We were at day hospital from 10 am till 2:20  pm.  When he got back to Hope Lodge, he ate a peanut butter and jelly sandwich and some fruit cocktail.  Then he went back to bed just about for the rest of the day, except to occasionally watch TV.  I got him up to take his meds occasionally and take his temp (which must be done four times a day).  And at 6 PM I tried to make him eat but he refused.  So I made him a milk shake with Ensure in it.  I am sneaky.  To get him nutrients I mixed Ensure in with the ice cream!  And blended it up.  He loved it.  Not that sneaky, I told him what I did, lol, before he drank it.  But that is all he would have for dinner.  He refused to eat.  The doctor says that if he does not eat enough he will have to go on a glucose IV instead of eating.

How am I doing?  I am having little spasms in my legs from sitting too long in the hospital rooms.  I can't go too far for walks because I can't leave his side.  I am afraid that my legs will spasm into charley horses any day now, which is SO painful, and has happened before.  I just don't want it to happen while I am driving, and wreck or something.  This is something silly to pray for, but please pray for my legs.  Thanks.

How else am I doing?  Holding up great.  Doing a lot of work for John. And emotionally fine.  It is nice to have him home from the hospital so we can have time together.   

Well, I am extremely tired now.  And John and I have to get up at 6:30 am to be at "day hospital" on time   tomorrow.  So I had better get off.  I love each of you. 

Krissy :)

The transplant took place

Yesterday the transplant took place from 11:45 till 1:45 am.  Dr. Claxton gave John two bags of stem cells.  The first bag took one hour.  Then he had a fifteen minute break, and the second bag took 45 minutes.

The reason why he had a 15 minute break in between is because he had a reaction when the first bag of stem cells were going in.  It is something called "flushing".  It is when you turn very cold and you start to shiver.  It was very hard to watch him shake so violently.  I mean he shook so violently, like he was having a seizure it looked like.  The doctor and nurse looked concerned at points.  He shook more violently and then the nurse gave him a bag of demarol to make him stop shaking.  Awhile after the first bag of cells went in, the shaking stopped.  Poor John, he said that he had strained his muscles.  He had strained the muscles in his back, shoulders, legs and arms.

The second bag went in very uneventful. 

When done John suddenly felt EXTREMELY wiped out.  He said he felt like he had no blood left in him.  Like they had drained all the blood out of him.  This of course is par for the course; he should be extremely tired for six to nine months at least.  After a little while he said he felt some better though.

I am making this sound somewhat dreary.  They said he is doing excellently.  They may even release John from the hospital this weekend and just have him go to day hospital everyday.  He will just go to day hospital every morning (probably 9 am till sometime around 1 pm) and then be released to come back to Hope Lodge.  They will be checking out everything on him when he goes to the hospital, doing all kinds of tests.  And then he will come back to Hope Lodge everyday.  Then he will get back in bed.  He will be doing this for months.  Just day hospital and bed.  But the staff said he has to come to the dining room to eat because the bedrooms are sterile.  They said if he can't make it to the dining room, then he belongs back in the hospital.  So it will be hospital, bed, and dining room for months, that isit.  And whenever he leaves Hope Lodge or the hospital he has to put on a mask.  He doesn't have to wear the mask in the hospital or Hope Lodge though.  But we are debating whether or not he should wear a mask at Hope Lodge.  Because there are a lot of people who cough a lot here.

Let's see.  What else.  The nurse told John he was blood type A positive, but after the transplant would be O positive.  You take on the donor's blood type!  How about that!  

Well, that is about it.  How am I doing?  I think I held up exceptionally during the transplant.  I was really there for him.  I stayed there all day to be with him, and some of the night.  Then he told me to come back to Hope Lodge and get some sleep.  

I feel pretty good.  On the other hand, I feel like crying, but tears won't come.  It is hard to see someone so healthy be made sick.  I know he needed to have this done to stay alive, but it is hard to see someone who looked so healthy be made sick, so he can become well again.  I am doing well, but am kind of numb, and my Sissy Val said tears will probably come in a few days.  She said it will be normal, because I watched somebody I love, my husband, hurting.  

I am grateful he had the transplant though, praise God he has this chance at life. 

Things are going to be just fine, there will just be a long road of recovery ahead from John.  But he is tough and a fighter and a trooper.  With a great positive attitude.

Thank you all for your prayers, and your words of comfort, and your cards.  They mean everything to me.

Love, Krissy :)        

Transplant is tomorrow!

What a difference a day makes.  Today I pulled it together and was fine.  I was really there for John.  I know the transplant is tomorrow and I need to be okay for him.  So I am.

I came into John's hospital room this morning and found him in bed.  He was really weakened today.  That is because his white blood count is only 0.3.  That is what his chart read.  It also read that his red counts were low, but not quite as low to require a blood transfusion. 

At about 3:30 Dr. Drebik came in to talk to John and me.  He said it was normal for John to feel wiped out and be lying down, and that he was still doing well.  He also explained to John that after the transplant, when John's immune system first improves, it will be John's cells that will be there, but then the donor's cells will take over by two months. 

After the doctor left I took some pictures of John.

Then the nurse came in and explained John's transplant that he will have tomorrow.  She told me to be in at 8 or 9 in the morning so I will be ready when the transplant will take place.  It will be some time in the morning.  They will actually let me be there!  It will take about one hour.  The cells will arrive tonight by plane .  They will get here tomorrow at the latest if the flight is delayed.  During the transplant we will all wear masks but John.  After the transplant, when John is finally discharged from the hospital, he will have to wear a mask all the time (except when he is in day hospital). 

During the transplant the stem cells will drip from a bag hung from the pole.  That is how most transplants are done nowadays, instead of injecting the marrow into the bones.  The stem cells will merely drip from a bag hung from the pole, down the tube, and into his chest port, and into his veins.  Somehow, the stem cells just know where to go!  That is what doctor Claxton tells us.  Dr. Claxton will be there the whole time, making sure everything goes smoothly.

How is John doing?  Remarkably well.  He is taking one moment at a time.  A little concerned about getting an infection, but ok.  A little sentimental about life.  But I think that is normal.

How am I doing?  Better than I thought I would be.  But I love John so much I didn't want to leave his hospital bedside tonight.  I made him promise that if he needed me tonight, or wanted me, to call me, and I would come back to the hospital and be by his side.  He promised, so I left.  I love him so much.  

Bye for now, Gotta get some sleep, tomorrow is the big day and things will never be the same, Krissy. 

  

John's hospital stay

Wow.  It's been awhile since I did an update.  Of course a lot of my time is consumed with being with John at the hospital, and I have not had time to do entries as much as I had wanted.  Here is a synopsis of how things have been since John entered the hospital.

Friday - John was admitted to the hospital.  He was started on chemo.  Two different kinds.  And some immunosuppressant drugs.  If I understand correctly, these are to kill his diseased cells, so when the new stem cells are introduced (when he receives his transplant), eventually he will become disease free.  Something like that.

Saturday - John felt sick today.  Very nauseous.  Headaches.  But he was still a real trooper.  He sat up in his chair all day, and he also went for walks up and down the unit hall when he was stronger in the morning.  He insisted on wearing his jeans and shirt and stayed dressed instead of wearing a hospital gown or pjs.  He continued his chemo today.  

Sunday - John felt a lot better today.  So much so that he helped the nurse decorate the unit for Valentine's Day, lol.  She had him out of the room and up and decorating!  He hung red hearts and other decorations all around!  He was quite the creative one.  He continued his chemo today.

Monday - John looked pretty weak, but his attitude continued to be great.  He had chemo again.  I hated to see him so weak.  

Tuesday - John continued chemo today.  He was also attached to a pole.  He was hooked up from the pole to his chest.  The pole has a line (tubing) that runs down it and goes into the chest port in his chest.  He has about four bottles of liquids that are dripping into his chest.  He has saline solution (or some kind of salt substance, lol) and he has immunosuppresant drugs running through the tubing into his chest port.  On Tuesday they hooked him up to the pole 24 hours a day until he leaves the hospital.  

John's hair is growing back at an extremely quick rate!  We made a joke about how he could donate his hair to the Hair Club For Men!

John was 248 lbs. when he entered the hospital.  On Tuesday he weighed 231.  That is a loss of 17 lbs. if my math is correct.  Sheesh.  They told him eat like crazy for nourishment, or he will have to go without regular food, and get hooked up to a glucose IV.  He was starting to have trouble eating a lot of food, because he says the food tastes yucky and sometimes bitter (this is a common side effect of chemo).

John got an ulcer on his tongue and a sore throat.  Sores on your tongue and sore throats (and even sores in your throat) are common for high doses of chemotherapy.  Hopefully it won't get worse.

The psychiatrist came and said John is doing great mentally.  His attitude is so good.  I am so proud of him.

Today they put up a chart on John's labs.  It showed the labwork (blood counts) that they had drawn on him all week.  One of the counts was his white blood count.  I sat there shocked when I saw it.  Normal white blood count is something like 4.8.  His was 0.6.  That is almost 0.  They told him they wanted to get him down to 0.1 or 0 I think.  That is why they are giving him the chemo and suppressing his bone marrow.  It is killing his disease.  I knew it was going to happen, but it is a shocker when you see it happen to your loved one.  It will ultimately make himbetter, but they are making him SO weak.  

On Tuesday night after visiting John at the hospital I went back to the Hope Lodge and cried.  I feel like my body is breaking down some.  My muscles hurt.  It is so hard seeing him hooked up to that pole with the tubes going into his chest.  And with all those bottles of fluid hanging down.  I thought I was so strong, but I am not.  Crying was all I could do. 

Wednesday - Today John had general malaise.  He was finally very weakened by the chemo.  They did not make him have chemo today, and will not make him have it tomorrow (Thursday).  They are giving him two days off of chemo before the transplant on Friday.  Even though he was weak, he still showered, got dressed, sat up in his chair, watched TV, and chatted with me.  I am proud of him!  The doctor said he was still their star patient!  

I wish I could say I was the star caregiver today, but I was not.  I had to leave John early tonight, because I thought I was going to throw up.  I felt so nauseated while visiting him.  I also started to get a little down.  I was there in the hospital room, looking at him hooked up to the pole (and ill), and waves of nausea overcame me.  And waves of sadness.  I know this is the thing that will save his life, but it became too much for me to handle right then.  I asked him if he minded I go.  He said go ahead.  I feel extreme guilt about it but there is nothing else I could do.  I needed a change of scenery, and I couldn't get sick on their floor.  Yes, it was that bad.  Now, I must get a grip on myself, and fast.  Afterall, I need to be there for him for the next several months.  Am I normal, or am I insane?  

Bye, and sorry this was so long, all my love,

Krissy   

John's mailing address

Hi everyone!  Here I sit at Hershey Hope Lodge at six something in the morning doing an entry.  The computer is fine here, it has been fixed.  So now I have a working computer. 

There is so much I want to talk to you all about; it has been a long time since I have made an entry.  But I don't want to make this entry too long.  So I will try to divide the entry over a couple of days.  The first thing I want to do, however, is give John's address where he can receive mail.  Please send all mail to this address where I am staying, and I will bring it to John while he is in the hospital.  

John Knox
c/o Hope Lodge
125 Lucy Avenue
Hummelstown, PA  17036

I will be receiving mail at the same address, just address it to Krissy Knox. 

Now a little bit about what has been going on, and John's schedule.  We arrived here at the Hope Lodge on Wednesday.  On Thursday John had his chest port put in.  He immediately had a problem with it, and we had to go back to the hospital, and he had to get it fixed.  Then on Friday, he was admitted to the hospital.  He received his first round of chemo.  He received chemo on Friday, Saturday, and Sunday.  He will get chemo today (Monday) and on Tuesday also.  Then they will give him Wednesday and Thursday off.  Friday will be the transplant! 

Well, that is about the skinny of it.  I was going to write a lot more, but I think I will save it for tomorrow, because I don't want this entry to get too long.  I will say, however, that John is doing very well.  He was sick the first few days of chemo, but yesterday was doing fantastic.  He has a very positive attitude, and lives "moment by moment", so that he doesn't get overwhelmed.  I will let you know more about how he is doing next time I write an entry.

I am doing fine.  Sometimes it is really hard though, especially when I see him sick (like he was during the chemo), and knowing there is not much I can do, except be his cheerleader, and take care of him in any way I can.  

Sometimes I have to get away, and not be at the hospital every minute, so I don't burn out.  It makes me feel a little guilty, but then on the other hand, I couldn't be any good for him if I was having burn out.  So I go for walks around the hospital, and go to the "family lounge", or go downstairs and get a frappuchino at Starbucks.  And sometimes I go back to the Hope Lodge and play Tetris or something, lol.  John even tells me to leave the hospital sometimes.  A former BMT patient told me sometimes that the patients need to be alone sometimes, they need their alone time to heal.  To work through some things in their mind.  This made sense to me.

Well, I better get off of here.  This is getting longer than I wanted it to, lol.  

I love you all lots, Krissy :)         

Hi!

I just wanted everyone to know that I found a computer that I can use on a regular basis to write in this journal .  It is in a lounge in the hospital.  So now I can give you all updates.  It is late now, and I have to go back to the room and help John with his chemo treatments, so I can't write much tonight.  But I will try to make sure I do an update tomorrow.  There has been so much that has gone on since we got here on Wednesday.  When I update next (hopefully tomorrow), I will give you the address to Hope House where John and I can receive mail.  That is where we will both be receiving our mail.  Well, I must get back to John.  I love you all.  

God bless, Krissy  

Computer may be out of commission for awhile

Hi!  John and I are here at Hope Lodge now.  We got here yesterday.  It is a wonderful place.  It is a very homey atmosphere.  Everybody shares the home, but at the same time you get your own room, which is like a hotel room, so you can be alone in your room, when you want privacy.  We couldn't ask for anything more by way of comfort.

There is one problem, though.  The computer may be infected.  They are checking it out.  So I don't know when I will be able to do an entry next.  If I can't do another one for several weeks, I hope you will understand.  When I can come back on, you will see another entry from me.

I haven't found out if I can get mail here at the Hope House yet.  When I find out I will let you know.  It may not be until this computer is fixed though.

Hope you all are doing well.

Love you all very much, Krissy :)

PS.  John gets his chest port put in today and starts chemo tomorrow.   

Transplant next week, finally

I am so tired right now.  I have been packing all day.  I don't feel like writing this.  But I have important news.  John and I are leaving for Hershey on Wednesday or Thursday.  And he will be admitted to Hershey Medical Center on Thursday or Friday.

We are going up one day early to get settled into Hope Lodge.

Then the next day, either Thursday or Friday, he is going to have a chest port put in.  He will have to have an operation to get this inserted.  It is a tube that goes into a vein in his chest.  He will receive fluids in it, blood transfusions if he needs them, the transplant through it, etc.  He will also have blood drawn through it.  The purpose of having a chese port (central line) is so that he will not have to be stuck repeatedly with needles.  The chest port will be left in for several months.  

The day after he has the chest port put in he will start chemo.  He will have chemo everyday for about four days. 

The next day John will have the transplant.  He will be lying down and there will be a bag that will drip the donor's bone marrow cells into his body through the chest port.  They tell us that somehow the bone marrow cells just know where to go in the recipient's body!  Wow, modern medicine!  

After the transplant is completed, John will go to the Transplant Floor.  He will remain there for several days while he recovers.  

When John is feeling well enough he will begin day hospitalization.  He will stay with me at night at the Hope House.  This could be for a couple of months, I don't know how long it will be.  It depends on how fast he recovers.  At first John will go to day hospital everyday, then eventually every other day.  The Hope House will let us stay as long as John is going to day hospital every other day.  Once it turns out to be every third day, we have to move out.  If this occurs, we are going to have to get a hotel, because we cannot drive back and forth to Hershey every three days.  We are going to have to play that one by ear when the time comes.  

So, I am going to keep you all informed though this journal.  I should have access to a computer when I get to Hope House.  I will try to write entries when I can.

Well, I am feeling pretty positive, considering.  and kind of nervous, lol.  The Lord has everything under control, I know that.

John is holding up quite well.  He is my trooper.

Oh, I shaved John's hair off today.  Well almost all off, just left the tiniest fuzz on.  Most people who are going in for a transplant shave it off beforehand.  That way they feel more in control, they don't have to watch it fall out in clumps after their chemo.  They don't get upset seeing clumps of it lying on their pillow falling out piece by piece.  This way THEY take it off.

I thought hair didn't matter.  And really in the scheme of things, it doesn't.  But seeing him kind of shocked me.  Maybe it made me realize that things would never be the same.

Okay, I will stop being philosophical now.  Change is NOT always bad. 

I better get off here before I get to ramblin', lol.

Talk at you soon, hopefully.  God bless, Krissy :) 

highs and lows

I'm pretty tired.  We got back from Hershey tonight, a few hours ago.  Yes, we went today, as well as yesterday.  John went yesterday for an appointment and tests.  And because John's local oncologist never set up the tests John needed locally, Hershey asked him to come back today too.  So it was two days at Hershey (Thursday and Friday).  This was difficult because it was six hours driving time a day, with a full day of appointments and tests.

It has also been exhausting emotionally.  On Thursday (yesterday), Todd, the nurse coordinator met with John and told him he had a date to enter the hospital for his transplant.  He told him it was Wednesday, January 11th (this Wednesday coming up).  He was to enter the hospital on the 11th, get the chest port (central line) put in, and begin chemo.  After several days of chemo he was to have the transplant.  Wow!   January 11th.  After hearing that, we were in a state of, well, part shock, and well, part being very happy, because a date was finally picked, and there would be no more indecision and waiting. 

Well, this morning, we got up at 3:30 AM, got back on the road, and came up to Hershey again.  The first test was very early in the morning.  Talk about tired, I was exhausted.  Getting home late yesterday and going so early this morning was so tiring.  Anyway, John's final test was at 3:00 PM.  He was taking a Pulmonary Function test when Todd walked in.  "Hi Mr. Knox," he said when John was finished.  John looked at him.  "Things have changed," said Todd.  "The donor is sick.  I can't tell you what it is, but let's just say this is flu season, and it is not unusual for somebody to get flu this time of year." 

"I don't know if this is good or bad," said John.  He was thinking that this would give him more time to get ready, and to do things that needed to get done; on the other hand, he was all prepared in his mind to go in the hospital.  "It is indifferent," said Todd.  Todd told him the hospital entry date will nowbe pushed later into January a week or two.  That pushes the transplant back.  Todd told him that he would call John at least a week before he is to enter the hospital.  So now we are back to another waiting game.

Wow, highs and lows in a two day period.  But it is ok, because this will give us more time to get things done.  At least we know this donor exists and he is willing to participate.  Please pray for the donor, that he get well soon, and for whatever needs he may have in his life.

That's about it.  Love you all, Krissy :)       

A little bit nervous

I'm frustrated.  Here it is Wednesday, and John and I still don't know the exact date of when the transplant will be.  Todd, the nurse coordinator, called me Monday morning and told me that he would tell me very soon when it would be.  He said that he might be able to tell me that very day or maybe Tuesday.  He was waiting for the donor to get back with him and let him know when he could get off from work to donate his bone marrow.  Here it is Wednesday night and no word.

I don't blame Todd, I don't blame the donor, I don't blame anybody.  Why should I?  Maybe the donor just can't arrange time off from work yet.  I am just scared is all.  My mind is getting away from me.  I am thinking, what if the donor has changed his mind?  I won't be one hundred percent settled until I hear that the donor has a date set that he will donate, and that there is a date for the transplant, and a date for John to enter the hospital.  Then I will relax.  I know I need to trust God, but it is hard to be in my position. 

Another thing that is frustrating is that some of the tests that John were supposed to have done locally were never administered to him.  He was overlooked and he fell through the cracks.  He called three days in a row this week, and they kept saying things like, "Oh, we stuck your orders in your file, we will pull them out, so we can have those tests done."  The next day John called and the nurse said she would check and see what was going on and she would call him back.  She never did.  Same thing with today.  If these tests aren't done John can't get the transplant.  They have to be done and read in time for the transplant.  They better get on the ball, as we don't want the transplant to be delayed over such ineptness.

Speaking of tests, John and I are returning to Hershey tomorrow so he can get another bone marrow biopsy.  They are going to do "staging of his cancer" so they can have a baseline for the future after the transplant, to see if he is cured.  

I have decided to be in the room with him, because he asked me too.  Maybe I shouldn't do it this time, but he really wants me to.  So I just won't look.

Well, that's enough for now, I gotta go, John and I are going to have a chocolate cake with cream cheese frosting.  It was his birthday yesterday and we want to celebrate.  We also rented a movie.  It should be fun!  He is 44.  I will come back after the appointment tomorrow and let ya'll know how it went.

Blessings, Krissy :)