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. :)

John's upcoming transplant

Hi everyone!  Happy almost Thanksgiving!

John now has a date for his transplant.  Well not really an exact date.  We know it will be sometime in January.  John had his appointment on Nov. 17 at his Transplant Center (Hershey Medical Center) and was told his bone marrow transplant (BMT) would be in Jan.  We were told to come back on Dec. 22nd and we would find out the exact date in January that the BMT would be. 

You probably read in my Sometimes I Think journal that John's MDS is turning into AML.  AML is like MDS leukemia.  It is very serious and often deadly.  He was told that if he did not get the BMT, there was a 100 % chance he would get the AML during his lifetime, and a 50 % chance he would get it within a year.  That is why he has to get the BMT in Jan.

Now on to other things I wanted to explain to you.  Some of this will be the same as the other journal and some of this will be a little different, as I have come to new understandings.  

John was told that he will get a non-ablative transplant instead of an ablative transplant.  It is also called a "Reduced Intensity Transplant".  As I stated in my Sometimes I Think journal, this means that he will be having less chemo.  That should be a lot easier on him. 

He will also have a greater chance for survival.  One of the reasons his transplant oncologist didn't want to do the regular transplant is because there was only a 60 to 80% chance of survial he told us on Thursday.  We didn't like the odds.  Well, I was just found out with the RIT (the kind he is having) the chance of survival can be as low as 73%.  Yikes.  No, I did not tell John.  I don't want to.  I want him to think positively.  I am not going to panic.  At least not today anyway, lol.  I have a good feeling that he is going to live.  

Anyway, what I am trying to say is this.  The odds of living through the transplant with the non-ablative transplant that he is having are better.  But there is a down side also.  Let me see if I can explain it simply.  Do you remember when I said in another entry that during a BMT, if you did not engraft (except the donor's marrow within 45 days), that you would simply die?  Well this does not hold true for John's new transplant!  Because he will still have some of his own bone marrow in his body, and some of the donor's marrow.  The chemo will not have killed off all his own.  So the positive side is that he can't die from lack of engraftment!  This is great!  The down side is very bad.  It is this.  If he fails to engraft, and the marrow is not killed off, neither is the cancer.  He retains the MDS, and possibly goes into the AML.  Drat, he may be fighting this cancer for years to come.

And there is still the possibility he will get Graft Verses Host Disease (rejection of the donor's bone marrow), and a white blood cell infection (both of which you can die from).

Ok, now that I have gotten the yucky medical stuff out of the way, I will try not to mention them all the time.  

I still do not think he will die. 

The next time I write an entry I will try to put some more positive and interesting things in here.

Oh, we will probably have to be staying in Hershey for more like two months than one month, like I initially thought.  We will have to wait for John to engraft.  First we will be staying with John in the hospital, but it won't be more than a week (unless something goes wrong).  Then we will be staying in something called the Hope House which is across from the hospital.  John will go to outpatient during the day, and then get to come back and stay at night with me at the Hope House.  Yay!!!  The Hope House is nice.  You get your own room, and share the rest of the house with the other residents.  I am pretty sure they have computers there, in which case I will keep up a journal so you all will be able to know how John is doing.

Well, thanks for letting me share, I hope I didn't bum anyone out, lol.  Have a great Thanksgiving, rest up, and eat a lot. Oh, and for my UK friends, and international friends, sorry if I said Happy Thanksgiving.  I keep forgetting you don't celebrate, lol.  Just have a great day!

Love, Krissy :)        

The Nurse Called

Sorry I haven't written in so long.  My life has been kind of busy.  You see, I have been helping John prepare for his upcoming bone marrow transplant because it is going to come sooner than we expected.  Let me back up and start at the beginning. 

I don't know if you read about it in my other journal, but John originally had an appointment on Dec. 1 to see his oncologist in Hershey.  But then after his last bone marrow biopsy (a few weeks ago), I was called on the phone, and told by the nurse that the results of the bone marrow biopsy were sent to the Mayo Clinic.  Then she called again, and told me that they had found something wrong, and that he would have to have the transplant right away, and that the Dec. 1 appointment was cancelled and that John now has a Nov. 17 appointment to discuss the transplant.

I guess she couldn't tell us over the phone what was wrong.  Maybe because she is a nurse.  But gee, that leaves me wondering.  Is there something seriously wrong with Chromosome 7?  That makes the MDS harder to treat.  Has he gone into AML?  That is a type of leukemia that MDS goes into when it is advanced.  It is not regular leukemia.  It is like MDS leukemia.  It is harder to treat than regular MDS and the prognosis is not as good. 

OKay, now my mind has gotten away from me, I will admit.  So I will immediately cut it out.  Those are things that have only briefly run through my mind.  It does not help to think about them.  I will find out on Thursday what is going on.  And then we will deal with it.  Meanwhile, I just won't think about them.

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So, I just asked John how he was doing.  "I am feeling hopeful," he replied. 

I am so proud of him.  He has such a good attitude.  He has become more positive lately and has decided to fight to live.  That's my John that I remember who got in the fighting mode to beat the Non Hodgkin's Lymphoma.

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So everyone, could you please pray for John this week?  His appointment is on Thursday. 

Wishing you all a great week, take care and stay close to the ones you love, Krissy :)