what this blog is about

Hi, this is Krissy :)

This blog contains posts I wrote from September, 2005 to June 2006.

Within this blog you'll find the ups and downs John went through as he battled cancer and made it through.

John discovered he had MDS (bone marrow cancer), went through treatment for it (chemo and a stem cell transplant), went through many complications, and has finally come out on the other side okay -- in remission.

This blog is my story as well as John's. As the events unfolded, I poured onto these pages my feelings, as well as the events that took place. Keeping this blog, as sort of a journal, was a great release for me. Having friends (and you online friends were the BEST) to give me feedback during this time was more than I could have asked for, and brought me the support and comfort I needed. For those of you who were there for me (and for John), and you KNOW who you are, I will be forever grateful.

During this time, I kept John's Journey With MDS going for another reason as well. I wanted to chronicle John's experiences as he went through this time in his life. I wanted a record. It is an important part of his life, and mine as well. So I am glad I kept it up.

Unfortunately, I didn't keep it up as diligently as I wish I would have. The story is still going on today, and I quit writing about it in June 2006. I just got busy I guess. And I got tired of keeping two blogs. So a lot of John's story -- of his fight against cancer -- is chronicled in another one of my blogs (my main blog), Sometimes I Think. If you would like to read more of John's story, all you need to do is check out my Sometimes I Think blog and pick up in there from the date where this blog left off. But keep in mind there are lots of other things I blog about besides John's story in Sometimes I Think. Sometimes I Think includes photo shoots, a question of the week every Monday, my daily life, and so much more! You'll have to wade through Sometimes I Think to read about the continuing saga of John!

And that is just what it does. It continues. Life with John continues. In January 2009 it will be three years since John has had his stem cell transplant (what used to be called a bone marrow transplant only a few years back). Most of the others who had an SCT in early 2006 when John did -- all the friends John came to know at the hospital there -- have since passed on. But John continues to fight. During the past three years, John has been hospitalized so frequently that, well, it has been something that we could never have imagined. And John's most recent hospitalization ended about a week ago. He was hospitalized for about three weeks. But you know what? He did get better. And his life goes on. So far he has been able to beat whatever has been thrown at him...

And he's in remission! From two cancers - Non Hodgkin's Lymphoma and MDS. Yes, the SCT has put and kept both cancers into remission. So you can't beat that.

This story for John continues. But I don't think I will be updating here in John's Journey With MDS. If I do choose to blog about what goes on in John's life medically, I will start another blog for that purpose.

I am going to keep this blog for a record, however. I just won't be adding entries to it. If you'd like to read it, feel free. Comment if you'd like. Or not. I'm just glad I kept it up as a record...

If you would like to start at the beginning, you can start here: John's Journey With MDS and begin with the post entitled "My first entry".

And if you'd like to meet the original guy -- John -- of whom this blog is about, you can find his blog here: too stubborn to die. I hope this isn't being too presumptuous, but I think he'll be there when you go looking for his blog because, I wouldn't lie to you, he's too stubborn to die! That's my guy!

Love and take care, Krissy :)

Thanks for your good advice!

Thank  you all for your excellent advice of just going ahead and talking to the medical personnel about my concerns.  I talked to them some yesterday.  And they answered some questions.  But they didn't know fully what the discharge plan would be because they decided they weren't going to send John home yet after all, because of his poor kidney functioning.  So I guess they have time to work on a plan.

I spoke immediately to them about the situation of them not showing us how to take care of the PICC line, nor where to order the supplies from.  Nor scheduling the bandage change.  The nurse practitioner was immediately apologetic in her neglect.  This made me feel a lot better and gave me more faith in them as a hospital.  Because they have always been totally on top of everything in the past.  I wanted to have that confidence in them again.  

I feel a lot better about things, I think we will have a plan in place when it is time to go home.  I hope.  If not, I will make sure there is one.  

And I see now that we are not going home (because John is having kidney function problems) that my inclinations about something being wrong with his health was right.  I was not just being paranoid.  I always know when something is wrong with him.  If they had just sent him home without checking his creatinin level it would have been bad.  One of the doctors had actually suggested just sending him home this past Friday.  The nurse practitioner told me so.  But she told him she didn't want to do that, and could he PLEASE come in to Day Hospital on Monday (yesterday).  I am glad she did.  If she hadn't we wouldn't have known how his kidneys were functioning.  Or maybe the test would have been done back home with a home nurse, showing chronic kidney failure, and we would have had to turn right around and come back to Hershey. 

Okay, enough already.  Got to go do some other things.  I am up much too early, but I am having trouble sleeping these days and I don't really know why.  Maybe I will go back to bed.

Love, Krissy :) 

Waiting for the other shoe to fall

It's been a long time since I have done an entry in this journal.  One of the reasons is because I wanted to update it, and I didn't want to write an entry and have it out of order.  But tonight I thought it was so important that I write, that I am going ahead and doing so.  I have a lot on my chest to get off.  Mostly I want to say that I think that John's doctor might send him home, and I just don't know if he is ready.  I am not trying to second guess the doctor.  It is just that John has so many things wrong with him, and I have a bad feeling on this one.

Okay, call me paranoid.  But the last two times John was hospitalized, I told myself, "By the end of the day, John will be hospitalized."  Neither time John had a fever.  Actually, I don't recall him having any signs whatsoever that he was going to have to go.  I just KNEW.  Call it women's intuition.  Or wife's intuition or something.  The times before that I knew also.  I just looked into his eyes and could see a fever or something coming on.  I can tell when John is not doing well.  I can tell before the doctors can tell when John is not doing quite right. 

And I don't have a good feeling about John going home.  Unless they give him home nursing care.  I don't know if they plan on giving him a nurse or not.  I guess I will find out tomorrow. 

I don't want to go all the way back to State College and have to turn around and come back again in a week.  Am I being paranoid and scared?

Okay, here's the deal.  They will probably be sending him home with a PICC line in.  A PICC line to draw blood from to take his labs.  It occured to me tonight that there is probably nobody in State College that knows how to change a PICC line.  Not even nurses can do it here in Hershey.  It takes the PICC team to do it.  And if he doesn't have a PICC team in State College do it, he will have to come to Hershey once a week to do it, or he will have to have the PICC line removed before he goes home to State College.  If he has the port (PICC line) removed, how will they take his counts?  He has been having horrendously low white and red blood counts.  He has been needing red blood packs (bags of blood), and has had very low white counts and needed to wear masks.  Also, how will they monitor his creatinin level?  What if it got high enough to need dialysis and they didn't even know?  Because they weren't monitoring it. 

Oh yeah, they can stick him each day when they want to take six to eight vials of blood.  But they usually don't like to do it like that.  They usually like to do it through a port of some type. 

You may think these are silly questions, and that they have already thought of them, but I don't have so much faith.  For the first time in over a month, they gave John two days off yesterday and today (Saturday and Sunday).  We were very happy, and then Saturday night it occured to me that they had never told us how to flush a PICC line nor given us PICC line supplies!!!  We were going to have to take care of the maintenance of the PICC line ourselves for the first time (Day Hospital had been doing it for John every day up until this time.).  Fortunately John had overheard a nurse talking to somebody in Day Hospital the other day.  He also remembered some of how to do the Hohn chest port he used to have, and I remembered some, and together we figured out how to flush the PICC line. It was kind of frightening, because we needed a different amount of heprin, and it took John to figure out how to get the different amount of heprin in the syringe.  You also have to apply a different amount of pressure when you flush the lines.  We overheard that too.  And another thing. John was due for a PICC line bandage change on Sunday which he missed because he had the day off from Day Hospital.  It was very important that he got it changed, because he has only had the PICC line for a week (remember, they put in a new PICC line), and it is imperative that they change the bandage on time so that it doesn't get infected.  Well Dr. Claxton told Day Hospital to give John two days off without scheduling a bandage change.  We have to make sure the PICC line team changes the bandage at Day Hospital on Monday.  And one more thing.  They didn't call the supply company for us.  I don't know WHAT they were thinking.  We didn't have the right size syringes for the line.  If John hadn't have overheard the amount of saline and heprin that was supposed to be in the syringes it would have been disasterous.

I am saying all of this to say, yes we made it through, but I don't like the sloppiness of what was done to us, and who knows what kind of treatment John is going to get when he goes home.  Are they even going to draw labs on him???

Okay, enough, like I said, perhaps I am just being over reactive and paranoid.  Maybe he doesn't need to go home with a bunch of labs drawn.  Maybe he will do just fine at home.  Maybe his creatinin level and his counts will clear up immediately.  Why am I apprehensive?  Maybe my feeling this time is wrong.  

I hate not know.  I am trying to relax here.

Krissy 

We are finally going home!

                        We are going home!!!

Wow, oh wow, oh wow, oh wow!  Tomorrow we are finally going home!  We got the green light from Sue at Day Hospital, and from Dr. Claxton. I haven't been this elated in, well, I don't know how long.  

John's GVH rash made a dramatic improvement, which is the main reason why he is allowed to go home.  He will get his last IV treatment for it this coming Thursday.  He will still have to take oral meds for the GVHD for a long time, however, to keep it in check.  But his GVH is improving dramatically!

Oh, John will still be receiving treatment at Day Hospital one day a week.  We will have to drive up.  It will be two and a half hours each way!  These will make for long days, but it will be worth it, because it will allow us to stay in our own home.  The first trip back here to Hershey will be this Thursday.  John will go to Day Hospital in the morning.  He also has an appointment in the afternoon to see Dr. Claxton.  And to get one of those yucky bone marrow biopsies.  It will be his seventh! 

Oh, I want to tell you all something before I forget!  John got his second Mixed Chimerism test back.  His immune system is 95% donor!  That is INCREDIBLE!!!   

Well I better run, I gotta get to packing!  Love, Krissy :)

Happy St. Patrick's and Italian Day!

Hey you all!  Wow it's been a long time.  I haven't had much computer access is why I haven't written in a long time.  The computer is completely down at Hope Lodge, I don't have access to the ones at the hospital, and only limited access at the library.  That is where I am doing this entry from now, the Hershey Community Library.  They let me have a limited amount of time on here.  

So here I sit at Hershey Library.  Wishing I were at home.  I wonder how much longer we will be here.  I am glad we are here though, John is getting the best of care.  Such wonderful, wonderful care. 

So how is John doing?  He is doing well in a lot of ways.  He is considered doing very well compared to most of the transplant patients here.  But he still has a few problems. 

His platelets are not real high (they have been progressively dropping).  Sue, the nurse practitioner, says this has to do with his Graft Vs Host Disease.  Low platelets make you anemic.

His HGB and HCT are not real high either.  But not low enough to require blood transfusions anymore.  So Sue says not to worry.  John has not had blood transfusions or platelet transfusions in several weeks, so he is doing well.  I am just the worried wife I guess!

He really is doing well, better than I expected.  He has to rest some, but he does not stay in bed all day.  I think yesterday he took a three hour nap, but that was it.  Then he came out into the living room with everyone else.  He gets up everyday, even if it is to sit somewhere.  Some days he has even more energy and does activities!  Right now he is at the library with me.  And he is driving now! 

His biggest problem is Graft Vs Host Disease.  He can't get rid of it.  He is on three medications for it now.  One of them is an IV that is administered to him at Day Hospital.  Since he started the IV, though, the rash has only gotten worse.  Last night was the worst I have ever seen it.  He was itching so badly.  It was covering his face, head, stomach, arms and especially back.  I am wondering how they are going to get it under control.  

So that's that's how John is doing in a nutshell.  I am doing OK.  Some days are stressful.  But thinking about it I think this experience has brought us closer together.  We are more in love than we ever were.  I think crisis either make you or break you.

Days sometimes here get boring.  You go to Day Hospital till the afternoon and then you have to come back and find things to do all day.  Well, yesterday was different.  Everyone here at Hope Lodge (who was well enough) had a really fun day.  We had a St. Patrick's Day Celebration!  First we had a big meal together - corned beef, cabbage, potatoes, carrots, and lots of sweets.  Oh, and I can't forget the Irish soda bread.  And somebody made potato candies colored with green food dye.  I found out it takes one apple-sized potato and a five pound bag of confectioner's sugar to make a small plate of potato candies.  Gross!  I didn't know you used one potato and all that sugar! 

Anyway, after the meal, we had Irish music.  The ladies sang songs together.  Then we all played games.  My table played Monopoly.  I won.  John came in second.  The whole day was so much fun!  Today I realized that the whole day (from 4:30 pm till 10:30 pm) we all had a great time, and not ONCE did anyone mention anything about their cancer or treatment.  It was a truly delightful time, and a great diversion - a time for everyone to get their mind off of their and their spouse's illnesses.

So today I hope we have another great day.  A Catholic Church brought in some penne pasta, salad, and rolls last night for us to eat tonight.  Somebody suggested we have Italian night!  I suggested we put on Italian music!  Everybody is wearing red for the occasion.  I guess because Italian restaurants have red and white table cloths, lol!  Anyway, it should be fun.  I am enjoying the camaraderie and diversion we are having.  Maybe I will be able to not be so bored till we get home... 

Great News!

Great news!  John got the results of his Chimerism test today.  It revealed that he was 84% donor!  Sue, the nurse practitioner, is very excited.  She said that is a very good first score to have.  I was worried when she first gave us the news, because I thought you were supposed to get a 90% or higher, but Sue said that wasn't true.  She said 84% was a great first score.  She said many transplant recipients score 15%, 11%, or even 0% donor on their first test. 

What I am really excited about is the fact that was John's first Mixed Chimerism test and his blood count scores were even lower then than they are now.  So he should score even higher on the next Mixed Chimerism test.  They took another one today.  I can't wait to see what the result of this next one is but I must be patient, as it will take two to three weeks to get the results back.

I will update on what has been going on soon, I just wanted to let everyone know the results.

Thanks for all the prayers!  Love you all, Krissy :)

Still waiting for results

Here it is almost three in the morning and I can't sleep.  Probably because I got too much sleep today.  I was sooo exhausted.  I didn't want to do anything so I just slept a lot.  And John rested too.  It was a nice lounging Sunday.

Tomorrow (Monday) when John goes to Day Hospital we are hoping to get the results of the Mixed Chimerism test.  The one that will show how much of his cells are the donor's and how much are his.  Wow, we thought we would get it back way before now.  Tomorrow will be two weeks and four days since the test was taken.  When they took it, they said it would take three days to get the results.  I asked Sue, the Nurse Practitioner, on the fourth day, what the results of the test were.  She just looked at me and told me it would take about two weeks to get the results back, because John had a male donor!  I was taken aback, because right before the transplant, before the cells were to enter John's body, the doctor performing the transplant and the attending nurse refused to tell us if his donor was male or female.  It is interesting to know more about the donor.  I have no idea why.  It makes him more personal that way. 

Anyway, if the donor were to have been a female, it would only have taken three days to get the test back.  There would not be as many chromosomes to match on a same sex donor.  When the donor is a same sex donor, you have to check out a lot more to see which are the donor's cells and which are the transplant recipient's.  It makes it harder to know whose cells are whose when they are the same sex.

So tomorrow is the big day when we find out.  Hopefully.  And then on the other hand, it is with some fear and apprehension.  Which is just plain silly, because all the worrying you do is pointless, because it doesn't change the results.  I don't know if I mentioned last entry, but they want to see 90% donor, and 10% John.  Or at least 70% donor at this point. 

So I will let you all know the results of the test.  And update you on some more things.  Soon. Really, lol.

nite nite, Krissy  :)