Visiting the Hospital Wing

What a tiring day today was.  It was another trip to Hershey Medical Center.  

There was lots to do again.  John and I met with the psychiatrist.  He is going to be checking in on John during his stay.  And we met with the head psych nurse.  She will be checking in daily.  In case John has any stress, anxiety or other problems they will be there.  John was told the prednisone would probably make him moody, and they would give him something for it (like an anti depressant).  Wow, it is nice to know in this day and age they have something like this in place for a patient.

We also met for awhile with the nurse coordinator Todd.  John got a chance to ask all the questions he had on his mind.  

He asked about how long the actually transplant would take, which will only be about an hour. 

He asked about the central line that will be put in.  The stem cells (bone marrow) are going to go in through a central line (chest port) which is going to be in his chest.  Before the procedure takes place, an incision will be made in his chest, and tubes will be inserted into his chest.  Then when it is time for the cells to be added (when the transplant occurs), they will be added through the tubes.  The bag of stem cells will be hung from above the bed and drip down through the tubing into the central line and into John's blood stream.  The blood stem cells will go right into the blood stream.  Somehow the stem cells know exactly where to go.  They will travel to where they are supposed to go.  After the procedure, for possibly even weeks or months, the chest port (central line) will be left in John's chest.  It will be used to draw blood, give transfusions or boosters, add additional fluids, or whatever will be necessary.  It will be important to keep it very sanitary, to make sure he doesn't get an infection.  Some people get infections in their chest ports, especially if they still have them in after they have returned home from the hospital.

We also asked for an exact date for the transplant, and he said mid January, and said we would know the date in two or three days.  He said the reason it wasn't pinned down yet, is because "a donor often doesn't know when he can get off of work to donate."  "For instance, he may have to take two days off of work to donate, and has to work it out with his boss."  "And he may be in the military, and not know which two days he can get off yet."  I said, "Oh, ok".  Very interesting I, thought.  Now I am wondering if he is in the military.  Todd went on to stress the annonymity factor and that the donor was going to remain anonymous.  He said he could tell me the city though.  John was out of the room at this time getting bloodwork done and I perked up and said, "Oh, will you tell me what city he is from?".  And he said, "I will not."  "I will not even tell you what state he is from."  "But in one year I will tell you what city he is from."  "Ok, I said."  I told him the only reason I wanted to know was so that I could pray for him, but it didn't really matter, because I could pray for him just as well without knowing where he is from.  

Wow, something just hit me.  He is a male from the US, lol.  He called him a he for several visits, and said he was from a city and state.  And I am wondering if he is in the military.  What a marvelous picture that paints.  At least I know he is a male from the US.  How nice.  I don't know why it matters.  It just does.  He is real now, God bless him a million times over.  No, infinity times over.

Next thing we did was an Advanced Directive.  Basically a Living Will.  John filled out the form, saying what measures he wanted done in case of an emergency and he was incapacitated and not able to tell the doctor.  He named me as the person to make decisions on his behalf if he were unable to speak for himself.  Valerie was listed as a third person if I was unable to be located at any point. 

Finally we went and visited the actual floor where John will stay on when he is hospitalized.  This is the first time we visited the actual Transplant Center.  We have been visiting the Cancer Unit next to the hospital but have never looked at the actual Transplant Center.  

I am glad we went.  This took a lot of the mystery out of it for John.  And for me also.  It was a really nice place.  Everybody was so friendly.  A nurse showed us around.  She explained things.  She wanted to show us a room, but they were all full.  I peaked in, and they looked quite nice.  Each room was single capacity and had a phone, TV and VCR.  And a large chair for company.  There were a bunch of VCRs in the hallway on a cart.  I don't know if John would feel up to watching a movie, but I just mention this to say how thoughtful they were.

When John was leaving a nurse came running up to him and told him she was the head nurse there, and if he had any questions, to phone or email.  Any questions at all.  She also told him to bring a new pillow from home when he came.  

Well, after speaking with her, we said goodbye and took off for home.  It took a long time to get back, but it was still early, so we picked up my Mom and went for Chinese.  It was good.

When we finally got home, I fell into bed from exhaustion and took a couple hour nap.  Funny how these things tire me out physically and emotionally.  But I woke up and John and I went out to get that pillow the nurse mentioned, and an electric razor she mentioned (because you can't use the blade kind), and a tape case to hold his tapes during chemo.  And a travel kit to hold his toilet articles in.  These things must get done before the transplant.  So much to do, so little time!

Oh, this entry has gone on too long!  I should write more often and then these entries won't be as long.  So sorry.

Much love and everything, Krissy :) 

Transplants in mid January

Merry almost Christmas!  Hope this finds you and yours full of the joy of the season.

Okay, so I said I would get back and let you all know about yesterday's appointment.  I will try not to make this as long a report as yesterday's entry, lol.

First let me say that John's transplant has been moved back to mid January.  Probably January 16th.  This is because they want him to do three additional days of tests.  Some of the tests will be on the 26th of December (here locally), some on the 29th of December (in Hershey), and some on January 5th (in Hershey).  The 5th will be the worst of the tests.  On that day John will have another Bone Marrow Biopsy and his disease will be staged.  He won't have the transplant on the 5th, but a biopsy again.  I asked him if he wanted me to be in the room.  He said yes.  So I guess I will do it for him.  I will do it for him, because I will do anything for him.  I will just turn my head and not look this time.

The nurse coordinator told the oncologist he wanted the transplant to occur as soon as possible after the tests are completed.  The nurse coordinator (Todd) is actually the one who sets up the date for the transplant.  I heard the nurse coordinator telling another nurse that he had finally gotten the donor to agree to go through with donating for the transplant.  This scares me a little as I don't want the donor to change his mind.  Please pray everybody that the donor doesn't change his mind. 

Todd, the nurse coordinator, said that he would make sure that the Neupogen (that expensive medicine) would be covered by the pharmaceutical company.  I still am a little leary, and wonder if later on it will come back to haunt us if we just trust him, but that is what I guess we will have to do.  He also said to go ahead and go with the prescription drug plan we had chosen.  I wanted him to look over it and make sure, to make sure we hadn't left off any transplant meds, but he was like, "don't worry, just order the plan".  I am a little scared to do that also.  If I am ordering a plan that does not contain one drug on it, it could be hundreds of dollars again.  I don't know why he couldn't have just taken ten minutes and looked at it.  He told me we had already discussed it and not to worry.  Hope he's right, lol.

Most of yesterday's appointment was spent by John reading and understanding a number of lengthy forms.  The most important one was the Consent Form.  They gave him a bunch of possible side effects and risks of the chemo and the transplant.  He was asked if he wanted to still have the transplant, and he signed on the dotted line.  He was told that 50 non-ablative transplants had been done at that transplant center and 7 or 8 people had died.  I thought YIKES.  He immediately said, "Oh, good, I can risk those odds".  I was amazed at what a trooper he was.       

We didn't have time to see the psychiatrist or for John to do an Advanced Directive, so those will have to be saved for the 29th.  They did have time to draw lots of blood from him though, including doing an HIV test.  

OKay,  this is about it, since I said I would only give the skinny.  Well, real quick, how am I doing?  Fairly well. 

How is John doing?  I am asking him right now:  "I am feeling fairly positive right now.  I am somewhat concerned about the graft vs. host disease, but I am fairly positive."

We are having a fun time right now doing Christmasy things.  Staying positive.  Yes, there is stress, but we are staying positive. 

Merry Christmas, Love you all lots, Krissy :)

The time draws near

Hi all.  I Hope you are having a good Christmas Season.  So many fun things to do, and so many ways to keep busy!

So tomorrow John is meeting again with Dr. Claxton at Hershey Medical Center.  He is having some bloodwork drawn and will be speaking to Dr. Claxton about some things.  Dr. Claxton will have him sign the consent form for the transplant.

It is going to be such a busy day.  Before speaking to Dr. Claxton, John will meet with the doctor's nurse to discuss the best Prescription Drug Care Plan for him.  One of John's insurances is Medicare, and he must pick a plan.  I have done research, and unfortunately none of the plans cover all the medications he will need next year.  I found the plan that will cover all the meds he is currently taking though, and all of the post-transplant meds, but one, that he will need in 2006.  The drug that he will need that is not covered is Neupogen.  It elevates the white blood cell count.  Needless to say, you need the medicine to live.  But it is not covered by the best plan, so they are telling him he will have to pay it out of pocket.  It only costs $366.13 per month, lol.  If he goes with a different plan where it is partially covered, then they won't pay for the other transplant drugs! So what I am basically trying to say is that we are supposed to pay $366.13 a month out of pocket, lol.  Not possible on our income.   

So after deciding if it is the best plan, the nurse is going to petition the drug company that makes Neupogen, and ask them if they will allow John to just have the drug for free.  Sometimes the drug companies do this in the US.  They have mercy upon you and give away a free drug if you can't afford it.  If that is the case, then I am going to enroll John in the health care plan.  It has to be done by December 31st. 

Let's see, what else needs to be done, lol.  John has to meet with a psychiatrist and psych nurse that will be following his case while he is going to be havinghis transplant. 

And then there is meeting with the Chaplain, to make an official Advanced Directive.  I guess that is like a living will, or a Medical Power of Attorney or something.  Are we tired yet?

And then finally it is off to the social worker to find out if we can get into Hope House; the social worker is the one who has to call and get us into Hope House.

Now, the how am I feeling part, lol.  Wow, John will probably get his date tomorrow that he will get his transplant.  That is kind of scary.  The days are ticking down.  Not really scary.  We are very much at peace, both of us.  But as the days get closer, it gets a little bit, well, more serious I guess. 

The nurse told John on the phone today that he has to come back on the 29th of December for bloodwork, and that the donor has to come on the 28th to be tested to see if he can give the bone marrow.  This makes me believe that the transplant will be at the very beginning of January instead of later. 

Now a commercial message from John (I am asking him if he has anything he wants to say!):  I will be glad when this transplant business is all over and I can get back to my life.  

Well, I will get back with you tomorrow, or if I can't do an entry tomorrow because I am totally wiped out from the trip, in a day or two.

Love you all very much,

Krissy :)   

John's Out

John's out of the hospital.  Finally!  He got out Tuesday at noon.   It's good to have him back.  He's glad to be back.  He hated the hospital food, lol.

It looks like the transplant is on.  He got a letter yesterday in the mail saying to come to the pre-transplant appointment.  That will be on Dec. 22. 

That should prove to be a big day.  John will get labwork done, have an examination by Dr. Claxton, and listen to a consent speech and sign for consent.  Then we will meet with a psychiatrist who will talk to John some.  Then we will meet with a social worker.  And finally we will go over to Hope House to get some things straightened out.  It will be a tiring day, as Dr. Claxton (the oncologist) spends between one to three hours with each of his patients.  He is very thorough!  That is one of the reasons we love him.  Oh, and we will meet with Ruth, Dr. Claxton's nurse, also.  We have some questions for her.     

Well, I guess this is enough chatter for tonight.  I am tired.  Did I tell you all I have 59 categories of things I have to do before it is time to leave for John to get the transplant?  I can't remember if I did or not.  Just thinking about it makes me tired, and I feel like I am falling behind, lol.  I felt better when I had the whole month of December.  Now time is slipping away from me.  I had so many other things I had to do last week instead.  Oh well, I know I will get lots done this week!

Ok, well hope everyone is doing well!  I am doing great, because John is home and doing well, and on schedule for the BMT.  I am just grateful for that!

Love you all, Krissy :)     

John's doing better

Ok, so things are looking up.  John's doctor called today.  His medication has probably been straightened out.  He still has a problem with sleeping soundly through the night (a side effect of going off the first med that he went off so he could have the BMT).  But they are working on the sleep problem.  She said he was probably going to be discharged soon.   

Let's see, what else is new?  Nothing as important as that, of course.  I am just taking a break, sitting here at my computer doing an entry.  I should be cleaning the house.  Well maybe not, it is almost one in the morning, lol.  But I slept a lot of today.  My house cleaning is so behind because I have had so much to do lately.  

There is a beautiful snow fall right now.  I can't believe I said that!  I have been dreading snow, there has been too much of it lately.  But this is a gorgeous snow.  We are supposed to get 5 -10 inches by sometime tomorrow.  In a way it is kind of nice, I won't be able to run around and do any errands.  It will be an excuse for me to stay trapped at home and clean, lol.  And then I will sit around and listen to Christmas carols and drink hot chocolate, and watch children's Christmas specials on TV, lol.

Well, I guess I'll go and get some things done now.  Well maybe I will, lol.  Take care all, love, Krissy :)    

John's in the hospital

Sorry to start out making these entries downers all the time.  I have been meaning to write an entry for awhile now to tell you all how positive John and I now are.  How different our attitudes are.  How we can really handle things.  And all of that is true!

But is it kind of hard right now also.  John was admitted to the hospital yesterday.  I won't go into the whole thing, but he had a reaction to one of the drugs he was taking.  He needs it in order to have a successful transplant.  Now the doctors are trying to find a med that will replace the one that he was on.  It has to be a certain kind that is not contraindicated with his upcoming BMT.  If one is not found in time for January, his BMT will have to be postponed.  I am probably panicking a little here, jumping the gun, but prayers would make me very happy.  Thank you so much.

So how am I doing?  Sad.  Sad that he was transferred to a hospital that is too far away for me to even visit.  Concerned that he may not get better in time.  On the other hand, I am not going to jump to conclusions.  I think I am holding out pretty steady.  I am pretty proud of myself for functioning quite well.  I am doing what I have to do.  I get up everyday and function, take care of myself, eat right, exercise.  I even feed the cat, lol.  I am getting by.  I am doing Christmas cards.  And I am about to burst into tears, lol.  Such is life.  Okay, that is enough of the dramatics.  I have faith in the Lord and I have faith in John.  John is a fighter.  And John and I are positive.  So we will be just fine. :)