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. :)

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 :) 

No testicular cancer

It's been a little while since I wrote in here.  I have been writing in my other journal, and sometimes I forget what I wrote in which one, lol.  I am going to have to go back and take the things that I wrote in the other one (SometimesIThink), and put it in here, just to update this one.  But for now, I will just have to put yesterday's news in here.  I talked to Ruth Martin, Dr. Claxton's nurse yesterday.  She said they were sending John's bone marrow biopsy results to the Mayo Clinic for cyogenetic testing.  I don't even know what that means.  I think I will look it up when I get done here.  She said it will have something to do with when John will get the BMT.

Okay, last entry I said I was going to tell you all a "funny".  Well, it turned out not to be so funny.  When John was almost asleep, I asked him a question.  He answered me.  And then I said, "Oh Honey, I love you."  He replied, "You are my favorite bone marrow transplant!"  "What?" I inquired.  "You are my favorite bone marrow transplant," he said again.  Then he went to sleep.  I thought it was funny at the time, but I don't now.  The poor guy has bone marrow transplants on his mind.

And he was under the influence of morphine.  It hadn't worn off yet.  The next day he told the admistrative person when we went into the hospital to get the procedure to see if he had another kind of cancer (you remember he he had to go in the next morning to see if he had another cancer, don't you?) that he wanted his father in Florida to be his emergency contact (instead of me).  He also told her he wanted his dad to make any end of life decisions for him.

Needless to say I was floored.  I asked him, "You mean to tell me, if you have to have an operation, you want your dad to make any decisions?  And what about when I go with you for the bone marrow transplant?  How is your dad going to make those decisions???  He won't even be there.  And he doesn't even know your wishes like I do."  

John growled at me.  "Why are you doing this to me?  First you want me to get a haircut and now this!"

I walked down the hall with him in silence.  We sat on a bench.  I was beside myself.  How would we rectify this one?  If John had to have surgery to remove this new cancer or whatever this was and I wasn't even his emergency contact, then who was I???  And what about when the bone marrow transplant came up?  This was insane.

He was called down the hall into a room.  I just started to quietly sob.  A woman on the bench put her arm around me.  "What's wrong she asked?"  "It's not the fact that he will have to have another operation for whatever he has," I said, "And it is not even the fact that he has two cancers already," "or that he needs a bone marrow transplant," (this poor woman had to ask, didn't she, lol), "but the bone marrow biopsy really stressed me out yesterday.  And he is being mean today and won't let me be his emergency contact!"  "Oh, a bone marrow biopsy," she said.  "Was he given morphine?"  "Yes,"  I answered.  "Well, then don't believe a word he says.  Morphine makes you mean.  Besides, he won't even remember what he said to you later."  So I was able to calm down.  I dried my eyes before John came out and was ready to go.  I was hoping she was right.

Two hours later John and I were eating in the hospital cafeteria.  "John, who would you like to be emergency contact for you while you have any surgery or are in the hospital?  Including your BMT?"  "Oh my, you," he quickly replied.  "And who would you like to help carry out end of life decisions, if it ever came to that?"  "ONLY you," he said emphatically.  I said "John, do you recall telling the nurse you wanted your dad to do it?"  "What are you talking about?" he asked.  Never mind, I said.  So I guess morphine makes you say crazy things, do crazy things, even makes you mean...

And by the way, John does not have testicular cancer like they thought he might have, instead it is a hydrocele.  It will eventually need surgery, but at least it is not cancer.  Thanks everyone who prayed. :)       

Nov 20 Appointment Results

Well, John and I went to John's appointment at Hershey Medical Center yesterday.  The appointment ended up lasting three hours!  As soon as Dr. Claxton got into the room, he told John he wanted to do a bone marrow biopsy.  Immediately John became nervous.  This is understandable.  A bone marrow biopsy is a very painful procedure in which the oncologist removes some bone marrow, which he extracts from the patient's bone.  But John agreed to it after Dr. Claxton promised him morphine.  So John was given two atavan, a morphine drip, and a lot of local anesthetics.  And he took the biopsy real well.  It still hurt him, but he got by.  He was satisfied with the amount of pain he had to endure compared to previous biopsies he had had to have.   

John asked me to stay in the room with him.  So I did.  To be honest with you, I am traumatized right now.  I will not tell John this, but I think I am going to have nightmares for years.  I am tough and can take ANYTHING.  But I have never seen anything like this before.  It has to do with the tools they use to do the biopsy.  That is all I will say.  I don't like to see the one I love get hurt.  And yes, I will go in there again if John asks.  I just won't look next time, lol.

So Dr. Claxton asked us to call in about one week if he doesn't call first, to see the results of the biopsy.  The biopsy will indicate the progression of John's bone marrow cancer, and help to determine when the transplant needs to be done.  Barring an emergency, John doesn't have to come back for six weeks (Dec. 1).  So it looks like the transplant probably won't be immediately unless the slides show something drastic.  This is ok with me.  I would rather wait a little later in the winter.  And let John get prepared this Fall.  He says he needs the time.       

I did something that wasn't too bright at the appointment yesterday.  Because we were just concentrating on getting through the bone marrow biopsy, I forgot to ask Dr. Claxton ifJohn had a perfect match, lol.  I must have been out of my mind.  Stress does things like that to a person.  Between the biopsy and discussing the transplant, it completely slipped my mind to discuss it with him.  I am going to call Ruth, the nurse, today and ask her if John has a match.  

So all in all the appointment went fine.  John said the biopsy hurt way less at this place than the four other times that he had it done at the hospital here where we live.  He was really pleased with the morphine that he got at Hershey!  He was in some pain, but definitely could bear it.  So I will let you know in about a week how the biopsy went.

Oh, before I forget, John need prayers and good thoughts for something.  John is going for a test this morning at our local hospital.  Please don't mention this in my other journal as it is a Shhhhhhhhh. Why alarm everyone when it may come to nothing?  He found a lump and it might be cancer.  It is NOT related to the Non Hodgkin's Lymphoma and NOT related to the MDS.  If it is cancer, it will be a third kind of cancer.  He is having the test today and will not get the results until Oct. 27 (a week from today).  So prayers please, and thanks.  I will let you all know after we get the results.

How am I feeling about this?  Numb.  I refuse to let myself think.  Whatever is true is already true.  I can't change anything so I am not going to think about it right now.  

Well, I was going to end on a sort of a funny, but I don't feel like it anymore.  I hope this entry didn't bum everyone out.  I do have good news to share too.  I will do it soon.  One piece of news is that I may have a cool volunteer job, and I have a craft I am going to start!  I will tell you all about that soon.  And maybe I will tell you the funny tomorrow... 

Take care of yourself and each other, you all, Love, Krissy :)

Wondering what the day will bring

I'm just sitting here in the early morning.  I didn't sleep a whole lot last night.  I am not real anxious, just a little keyed up I guess.  I mean who wouldn't be in my shoes?  I probably will find out a lot of information today at John's appointment at Hershey.

I wonder if he has a match.  And I wonder if they will do the BMT this winter.  I wonder about a lot of things.  But I am not worrying, really.  I know it is all out of my hands now.  I trust in God's timing.  Thanks, Betty, for showing me this ;).  

Please think of and pray for John today if you get a chance.  I don't know if we will have any information or know anything right away, but I will come back and do an entry.  But I won't be able to do it until Friday or the weekend because we might not get home until late today.  Today will be an all day affair, it takes several hours to get to Hershey, several hours to get home, and many hours for the appointment.  And John might have a bone marrow biopsy today (ouchie). 

Well, I am thinking of you all, our support system.  You help us get through.  Think and pray for us too.  Love, Krissy

Hopefully John's insurance will pay

Wow.  Last night I had a big scare.  John told me that Dr. Claxton, the transplant specialist, had told him that his insurances may not cover the bone marrow transplant.  I have heard of cases like this where the families have had to go fundraise before being able to schedule the transplant.  Now THAT would be a nightmare, I am already going through enough stress.

So after John tells me this at about nine o'clock last night, I got on the internet and did a google search.  I typed in "Will Medicare pay for a bone marrow transplant?"  John has Medicare Part A and B as his primary payer, and Medicaid as his secondary payer.  Where the search led me to was a page that explained what kind of bone marrow transplants would be paid for under Medicare.  John's bone marrow cancer (MDS) was not listed among those that would be paid for.  My heart sunk.  But at the bottom of the page there was a note that said that the bmt would be paid for if the local area (I think they meant state) agreed to pay for it.  

Well, needless to say I had a hard time sleeping.  I determined that as soon as morning came I would call both Medicare and Hershey Medical Center to see it he was covered.  At the stroke of 8 am, I dialed Medicare.  I asked the woman on the other end of the line whether or not the BMT would be paid for and she began to read from a book the page that I had read on the internet the night before.  I told her I had already read that page, and that John did not fall under any of the categories that were paid for, and told her about the blurb at the end.  I asked her if his kind of BMT was covered in PA.  She promptly told me she didn't know.  Sheesh, who was I supposed to ask then?  I asked her that.  She said she didn't know.  Then she told me to assume it wasn't covered, as it wasn't listed at the top of the page under the transplants covered.  I told her I wasn't going to assume anything (in my sweetest voice, of course).  Then she told me to call the hospital where he was going to get the transplant at.  

I got ready to dial Hershey Medical Center.  I wondered if this too would be fruitless.  Often I get somebody at a hospital who has no idea what they are talking about.  I hadn't had much experience with the clerical staff at Hershey, so leerily I gave it a try.  I was pleasantly surprised!  Immediately the receptionist put me in touch with a woman whose sole job is to be financial counselor to those who are going to have a BMT!

She told me that Medicare did not pay for those who got BMTs for MDS in PA.  However, she believed that John could probably still get the BMT.  The way it is going to work will be like this.  This woman Christine is the one that recommends to the hospital who gets the BMT.  She said she will recommend that John get one.  The physicians on staff will have to concur with her, but she doesn't forsee a problem, as the BMT is a medical necessity or John will die.

This means that the Hershey Medical Center will pre-approve the BMT for John.  Medicare will not pre-approve, however.  Hershey will go ahead and do the transplant.  Then Christine will submit the paperwork to Medicare asking them to reimburse the hospital.  She said that in the past Medicare has always reimbursed because MDS turns into AML (MDS leukemia - which kills you even quicker than MDS).  But even if Medicare doesn't reimburse the hospital, she said the hospital would absorb the cost, because the hospital already pre-approved the procedure.  That means John and I would "not have to pay the hundreds of thousands of dollars that would be incurred as a result of the procedure".

This presumes that the physicians agree that the hospital will take John on as a special "Medically Necessary Case" and pre-approve him.  I said all of the above to ask each of you to pray that the hospital will pre-approve John for the BMT procedure.  Otherwise, it aint happenin'.  But at least he has a good shot. 

Thanks, Krissy :) 

I'm adjusting

Since I last wrote, I have really started to adjust a lot.  My anxiety level has come down.  I see the road ahead of me is going to be long, but I know that with God's help I can deal with it.

The thing that struck me suddenly was that I was looking at the magnitude of the whole thing.  And it is going to be very serious.  Just to explain a little, and I won't get into a lot, John's hospital stay will most likely be 30 - 90 days, and then a year's recuperation at home. 

The first three to four weeks at the hospital seem rough to me.  I feel bad for John for what he is going to have to go through.  I have been told that he will be so sick (and I will not go into all the details here, I will spare you all the medical ones) that he won't be able to sit up in bed for more than a few minutes, won't be able to concentrate to read, and probably won't even be able to watch television.  There may also be hallucinations that will come because of medication.  That is all I will say about it for now.

In some ways, when he is released to go home, it may be even harder on me according to what I have heard.  Because I will have full care for him.  He will have a chest port in, which I will have to make sure doesn't get infected.  There will be other medical things going on, but again, I will spare you all the details.  I probably have said too much already, lol.

So this is why I was a little anxious.  Actually, I wasn't concerned about myself, I was concerned about him.  But I am just sharing with you all a little of what I am going to go through.  Because you all are who I have to share with.  And I am more than grateful for that.  You will never know. 

You all will never know how grateful I am to have you to share with.  Since John got diagnosed, most of my friends have left me.  And his have left him.  Our families have stayed, but not friends.  I have discussed this with people in the Bone Marrow Marrow Transplant (BMT) chat room (see link under Favorite Sites if you ever want to visit!) and they said friends you have had for years often leave when you or your loved one gets cancer.  It is because they don't know what to say.  Then you pick up new friends.  People who you never thought would be there.  Well, I want to thank you all for being my new friends.  Thank you all for being support.  And most of all thank you for being there for John, and for sending him cards.  It means more to him and to me than I will ever be able to express to you. 

So perhaps you want to know how John is feeling.  Boy I am jumping around from topic to topic.  He hasn't been doing too well lately.  He is sleeping a lot of hours, is always fatigued, is almost always nauseated, and has constant headaches.  I thought with the headaches he was catching something, but I just read an article about an hour ago that headaches are a symptom of MDS.  I didn't know that.  He will have to tell Dr. Claxton on the 20th how bad they are.

Well that is about it for now.  Take care everyone and have a great day.  I will have a good day by taking one step at a time.  All is fine and we can do this.  Krissy :)

Maybe this winter

Wow, today was a scary day.  I haven't been able to shake this anxiety all day.  Which surprises me.  I thought I was Miss Calm Cool and Collected.

John and I called his oncologist at the Transplant Center today.  He needed to ask whether or not he could stay on a certain medication, or if it would be contraindicated with the bone marrow transplant he is going to have in the future.  Well, Dr. Claxton told him he would have to get off the medication.  And then John spoke to him about some more things.  He told him that he had been catching things lately (bronchitis, etc.).  Dr. Claxton told him that he wanted him to do another bone marrow biopsy soon (ouch, they core you for that one!) to see what stage the MDS was at.  John also asked him if he should get a flu shot, and Dr. Claxton said it would probably be pointless to get one this winter, as he wouldn't need it, as he might very well be getting the bone marrow transplant this winter!

I got on the phone, not knowing what they had discussed, and told Dr. Claxton how many hours John had been sleeping.  He said this concerned him deeply, and with this information, and based on what John had told him, and the fact that there may be an available donor, he was thinking about doing the bone marrow transplant this winter.

To be honest with you I am stupified.  I knew it would be soon, but not this soon.  October is in two days.  That means winter is in two months.  So technically we could be talking two to five months here.  This is so shocking to me.  I thought I would be so calm when it came, but when it is staring you in the face it is different.   

Well, that is about it.  I guess I won't jump to conclusions.  I will know more on Oct 20th.

Take care everyone.  Love, Krissy :)  

 

 

John has two angels!

First I want to say thank you to everyone who has said they will send John cards.  I haven't told him about it, so he will be surprised!  I can't wait to see the look on his face!  Actually, he has received two so far, and they were from the UK, the first overseas cards he has ever received in his life!  Thanks ya'll!  He was so excited.  

And guess what else?  He made it into the Chemo Angel program!  He received a letter on Friday from a family.  Then he received another letter from a woman on Saturday, lol.  So he has two Angels, lol.  What amazes me is how the Chemo Angel organization matched him up so well.  I was worried that I specified too much on the form, and that they weren't going to be able to find him anybody.  But they did.  I won't go into too much detail, for privacy reasons, but the first Angel had the same religion, liked cats, liked the same crafts as me, and had the same interests as John.  The second Angel was a Christian also, was a cancer survior, and has had a bone marrow transplant!  She has three cats!  She also likes the Green Bay Packers like John!  So you see, they really match the cancer patients up with like-minded Angels.  Oh, the reason I know all this information is that his Angels have already written to John!  One sent a letter dated the 20th and the other a letter dated the 21st!  So he must have been accepted into the program on day one or something.  I worried for nothing.  I was never contacted by the Chemo Angel Organization, however, that he was accepted.  They just contacted the Angels and the Angels wrote to John.  Just as well, he got a surprise letter from each of them!  Surprises are nice.

So now for an update on John.  A lot of you have been emailing me asking how he has been doing.  Well, he has been sleeping extremely long hours.  Saturday through Wednesday of last week he couldn't wake up.  On Saturday he slept 24 hours straight, except for when I awoke him to take his meds.  Sunday through Weds. he slept about 20 hours a day.  When he realized what was happening to him, he was able to make himself stay up some, and was able to get away with only sleeping 14 hours a day.  So that takes us to today.  

Right now he has the start of bronchitis.  I guess he is starting to catch things again.  I am going to call the Transplant Specialist, Dr. Claxton, on Monday and ask him if John should get a flu shot this year.  I am also going to ask him if John should be drinking something like Ensure on days when he can't wake up for 20 or so hours, except for five minutes to take his meds, and is too tired to eat.  I was thinking that at least he would get some vitamins and nourishment that way.

Okay, so this report sounds glum.  Everything is not glum.  There ARE times lately when he is up, and we are having quality time together.  We listen to music together, watch TV, eat, and spend a lot of time talking.  The other day we celebrated Michael's birthday.  He is eight.  We gave him half a can of tuna and played with him with his favorite toy.  We didn't buy him a new toy, because he is not interested in any new toys, because they bore him.  He is too smart for them!

Well, that's about it, hope ya'll are doing well, Krissy :)    

Chemo Angels

Hi everyone.  In the last entry I was talking about some important things and wanted to give you an update.  But I am going to save that for another entry.  I have something else I wanted to talk about tonight.  I wanted to ask for prayers and good thoughts for something.

I am hoping that John gets into a program called "Chemo Angels".  I found out about the program through two journalers.  If you want to know more about it the website is www.chemoangels.com.  What they do is match a "Chemo Angel" with a cancer patient.  The Chemo Angel sends the patient cards, post cards, letters, and sometimes even a magazine subscription or something to eat.  

First I didn't know if John would qualify for the program.  The site said it was for patients currently going through chemo.  John will have to go through chemo, and maybe radiation, and then a bone marrow transplant, but not quite yet.  So I emailed the Chemo Angel Network, told them he had MDS, explained that he was going to have a bone marrow transplant, and told them his health condition and how many hours he was sleeping a day.  They emailed back and said he would qualify.  Then they asked me to fill out a form on the internet at the site.

I talked to John about it, and he said that getting a card or a postcard from somebody would really cheer him up.  It would really make his day.  He became very excited.

So I proceeded to fill out the form.  When I was done I hit submit.  To my surprise it stated, "If you are selected, you will hear back from us within ten days."  I am so nervous.  What if I don't hear back?  I really want this for John.  He deserves to be cheered up!  I am also worried that I filled out parts of the form wrong.  Where they said put his oncologist down, it said: address, city and state.  I thought that that meant to put the city and state.  Now I am wondering if they wanted the street address.  If they can't verify him through his oncologist maybe they won't accept him.  

Anyway, please pray that he gets accepted.  I want him to get a card or postcard sometimes to cheer him up.  Or whatever.  

Thanks, Krissy

Redefining Myself

Hello.  Hope everyone is doing well.  I am OK.

I posted a couple of entries ago that John has been sleeping 16 hours a day.  I also said this was causing me lonliness. 

You see, John and I have been doing everything together for a long time.  We have both been home together.  He is on disability and hasn't been working.  So we see a lot of each other.  I don't have a job because I am on disability too.  So I have been home with him.  This is going to be hard for me to be honest about, but I may as well mention it, because it is part of my story.  Some of you know it, and some of you don't.  I don't work because I am bipolar.  That is manic-depressive.  It is a brain chemistry illness that I am handling very well with medication and therapy.  I have journaled about the fact that I have it in my public journal.  So it is no secret.  But I haven't mentioned it much lately.  My new readers don't know I have it.  I feel shakey mentioning it, there is so much stigma involved.

At any rate, I am mentioning the bipolar to say that I have spent the majority of my time doing things with John, because I don't work.  Now that he is sleeping, I am terribly alone, and as it were, trying to "redefine myself".  I have been nothing but John's wife, John's friend, John's love, John's everything.  And I have been almost nothing for myself.  Gee, I never realized that.  My whole world revolved around him.  Not that that is a bad thing.  My world still revolves around him.

My main job in life, and rightfully so, consists of taking care of John, making sure he gets his meds (I have to wake him up to do this), cooking for and feeding him (again, I have to wake him up to feed him), hydrating him, waking him up and making sure he gets to his drs. appointments, taking care of him when he gets the flu, etc. 

But now that he is sleeping, I am trying to think about what I want to do that is just for me.  Gee, I haven't done anything just for me in a long time.  I was talking about it with my therapist yesterday, and I told her I wanted some activities that I can do while John is asleep.  Something that as he gets sicker I can still stay in the house and watch him, but have something to do.  Something I am good at.  I told her I couldn't decide what to do.  Do I want to watercolor?  Write?  Make cool jewelry?  Something I could do really well.  Then I looked at my therapist sadly and said, "But I am not any good at any of these things."  She asked me why I had to be good at doing something to do it.  She suggested I just pick something I enjoyed.  She said she goes to Pottery Barn and paints bowls when she gets stressed.  She said she was not good at it.  Then I understood her point.  I just have to find something I think is fun.  My problem is my family is SO super talented and creative that I get frustrated if I can't make a final finished project the way they can, lol.  So, anyway, I need to think about what I want to do for fun.  Any suggestions would be welcome.   

The other thing that my therapist suggested was volunteer work.  I can't earn any money or my Social Security will be taken away.  If not taken away, then at least some of my benefits will be taken away, and I will be worse off than if I had never taken a job.  So the work must be volunteer.  Also, because I still get depressed, and sometimes manic, and I have a lot of anxiety going on because of John's illness, I can only take on a commitment of a few hours a week.  Also, I can't leave John for long.  Just a couple of hours at the most.  So I am trying to find something that will fit into my schedule.

My therapist suggested a cat and dog adoption agency, and I loved the idea, but then I got to thinking, I can't bring home Parvo Virus to John.  Then someone suggested to work at an old folk's home or a hospital.  Again, too risky in the germ department.  I have no idea what I am going to do.  But surfing the net last night I found a local number to call to find volunteer activities in my area.  I am going to call today. 

I used to teach English as a Second Language.  I wonder if I could do that again.  I loved it.  But it is a big commitment.  Anyway, I will call the volunteer agency this morning and see what volunteer opportunities they have.

So, I am doing all this so I have purpose in my life.  A reason to get up in the morning besides housework.  Something to get past the lonliness.  I do have two other things I am volunteering for.  I am on a board at church.  And I just joined the local Cancer Survivor's Association Board.  Actually, the board just started and we have had two meetings so far.  It is fantastic. 

And I am also a Secular Order Carmelites Discalced.  I am a member of a religious order, one in which the members live in the world, and are allowed to be married.  OK, I will explain more about that another time, this journal entry is getting entirely too long, lol. 

So those are some of the new ways in which I want to define myself, but I need to think about the specifics.  I am kind of excited about volunteering, perhaps meeting a new girlfriend to go to lunch with, and maybe learning a new hobby.  I haven't done anything new in a long time.  Maybe I will have some fun. 

Hoping you all have some fun in your life also, Krissy :)

Not without risk

Today was a good day.  John got up early.  Early as in 11:30 AM.  He has been feeling a little bit better lately and hasn't caught anything in a few days.  So he was able to get up this morning and make a doctor's appointment.  And get some bloodwork done.  And he even came home and helped with some housework.

I made a chicken dinner with the trimmings.  It was real nice to eat together and have some quality time. 

I also received two books in the mail that I had ordered.  One is called Bone Marrow and Blood Stem Cell Transplants from bmtinfonet.  The other is called Across The Chasm, A Caregiver's Story by Naomi Zikmund-Fisher.  I feel so good to be armed with information.  It is empowering.

Well, I thought it felt good anyway.  Until I started reading the caregiver book.  The caregiver book is written by a woman named Naomi whose husband had MDS and was waiting to have a bone marrow transplant.  (He eventually does have a successful one.)  Each page is written in entry form just like this journal.  She wrote it to keep others informed as to her husband's progress.  Well, I was thoroughly into the book, and it was helping me, until I got to this one entry.

Actually, this particular entry was written by her husband, Brian Zikmund-Fisher.  He explains that he was only given about 25% chance of making it through the first year of the transplant.  He explained why.  Now if you are squeamish, I suggest you stop reading now!  Seriously. 

A bone marrow transplant patient is given extensive chemotherapy and/or radiation before he starts his transplant.  During this time, the chemo destroys his bone marrow and his immune system.  The purpose of this is two fold.  The first reason to destroy the bone marrow is to get rid of every cancer cell that is residing in the body.  The second reason to destroy the bone marrow is so that the new donor's bone marrow can be added.

Herein lies the big risk.  Without an immune system, the transplant patient is vulnerable to any infection that comes along.  As Brian explains it in the book, "even a minor cold can kill you, and unfortunately, sometimes it does."

So that is what I read about today.  Not too much fun stuff.  Pretty scary.  I have also read about other complications to a bone marrow transplant.  One is GVHD, which happens when your body is trying to reject the new donor's bone marrow.  And then there is the total failure to engraft.  This right out kills the patient.  Total engraftment is very rare these days I have read, but nonetheless, a possibility.

OK, so if you have read to here, you probably have guessed how nervous I am.  But still hopeful.

Oh, and modern medicine is ALWAYS improving.  From glancing at the book, Brian had his bone marrow transplant in 1998 or 1999.  Modern medicine has come a long way.  These transplants are improving. 

John and I have hope.  Lots of hope.  

John may have a donor!

I am so excited I could do cartwheels, even though I have never been able to do them before!  I'm singing for joy at the top of my lungs.  John may have a donor!  Oh praise God!

On Wednesday John called Hershey Medical Center (where he is going to have the bone marrow transplant) to ask if a donor was found for him yet.  Ruth, the RN who handles such matters, was not in.  So John left his name and number.

Yesterday, Ruth called back.  She told John that one more factor needed to be checked, but they think they have found him a perfect match.  A PERFECT match!  She told him to keep positive, because when everything has matched as it has thus far, the last piece almost always matches too.  She said by the time John comes to see Dr. Claxton on October 20th, they will be finished with what they need to do, and will be sure whether or not it is a match.

I am so excited.  Dr. Claxton told John at his initial appointment that he had an 80% chance of finding a donor.  While this is a high percentage, in the back of my mind, I kept thinking, what if he was in the 20% who can't find a donor?  Well, today's news is a good sign.  It looks like his marrow type is not a real rare one.

So I hope they found a donor for him on the first check...

On another note, many of you have been asking how John is doing.  Well, his cancer is progressing.  His biggest problem is that his white blood cell count is very low, and he is catching everything that comes down the pike.  Recently he has had a cough, a skin infection, and a virus.  And then he caught the flu which he promptly gave to me.  I have to get a flu shot this fall because I can't afford to be sick also.

He also has a very low red blood count.  This makes him VERY sleepy.  He sleeps about 16 hours a day, sometimes more.  He is asleep right now (he hasn't gotten up yet today) and it is 5:20 PM.  This causes me a lot of lonliness, but that is material for a whole nother journal entry.  This one is getting too long.  I don't want it to sound like he has totally fallen apart - we do have some time where we can do things together, and we are making the time together very quality time. 

Well, bye for now.  Hope everyone is doing well.  Love you all, Krissy :)   

John is diagnosed

June 16, 2005, wasn't just like any other day.  John and I sat in Dr. Ford's office waiting to hear what the results would be from John's recent tests.  The door to the doctor's office opened and the oncologist strolled in.

He looked quickly over at John.  "Well, I have some good news for you.  You don't have Non Hodgkin's Lymphoma."

"Great!" John and I both blurted out at the same time, relieved.

"You have something else," he continued.  "You have Myelodysplasia."

John and I were both stunned.  We thought he was giving us good news, and now he was bringing up this word Myelodysplasia.  What was Myelodysplasia anyway?

Dr. Ford explained that Myelodysplasia was bone marrow cancer.  John's bone marrow wasn't working properly.  He said it would eventually turn into MDS leukemia (something called AML), and that John would need a bone marrow transplant to stop it from doing that. 

Now we were even more stunned.  And horribly frightened. 

Apparently John knew a little bit more about bone marrow transplants than I did.  He said, "Well, I've heard about bone marrow transplants before.  First they have to destroy some of your bone marrow.  If the donor's marrow doesn't take, then I die."

"Well, it's not without risk," Dr. Ford said.  "But you need to do it.  Because without it you WILL die."

Then he got up to leave the room.  "I'm sorry," he kept saying and shaking his head.

On the ride home John says that everything that Dr. Ford said, and everything that he knew about bone marrow transplants kept going round and round, over and over, in his head.  It was "traumatizing" is the way John is describing it to me.

Traumatizing is how I would describe it too.  I was frightened beyond words.  What would the future bring?  

A battery of tests

Upon coming home from the honeymoon, reality began to set in.  The possibility that John had cancer again loomed large.  yet I wasn't really sure.  Maybe he didn't have it.  Maybe there was another explanation.  Maybe he did, maybe he didn't.  I couldn't get any peace to my mind.

He immediately went in for a battery of tests.  I don't remember them all.  There was a CT scan and a PET scan.  Oh yeah, and a bone marrow biopsy.  How could I forget that one?  That was the one that hurt my beloved so badly.  They had to core some of the bone out of his pelvis while he was still awake.  And this was the test that eventually showed that he had MDS.  They merely took the marrow in the bones and looked at it under a microscope to make the diagnosis.  There were other tests that helped confirm the MDS, but the bone marrow biopsy was the main indicator of it.

Anyway, we didn't know the results right away.  For some reason it took three weeks for the oncologist to get the results back and analyze them.  Both the oncologist and we were still suspecting that the problem was the return of the Non Hodgkin's Lymphoma.

So imagine mine and John's surprise as we sat in Dr. Ford's office that day and he said, "I have some good news for you.  You don't have Non Hodgkin's Lymphoma John."

"Great!"  John and I both blurted out in relief at the same time. 

Then he quickly added, "You have Myelodyspalsia."

Little did we know that from that day forward our lives would never be the same. 

Suspecting something was wrong

This journal is for what is going on currently, today, in my and John's life.  And my feelings.  But for a couple of entries I wanted to share with you some recent events that led up to where we are now, just so everyone will have a little background.  Bear with me as I do so.  It is part of the story. 

John was diagnosed with MDS on June 16, 2005.  We will never forget those dreaded words as they came out of the oncologist's mouth.  "You have Myelodysplasia."  But let me back up for a minute.  I am leaving part of the story out.

About a year before the diagnosis of MDS, John was getting a routine blood test.  He was constantly getting these tests as part of follow up for the Non Hodgkin's Lymphoma he used to have.  The test showed anemia.  John wasn't surprised.  He had felt so tired and run down for so long.  As the months wore on, the oncologist did more tests, and told him that he still had anemia.

Meanwhile, in December of 2004, John proposed to me.  We were on cloud nine.  With the help of my parents, we were planning a wonderful wedding.  We were ecstatic at the thought of spending the rest of our lives together.  Our future was so bright.

Then a week before the wedding John had an appointment with his oncologist.  He came home and told me what the oncologist said.  "He thinks my cancer is back."  I thought I had been whacked upside the head with a two by four.  I walked around the week before my wedding in a stupor, trying to pretend nothing was wrong, keeping a straight face, because I didn't want my family to find out about it and worry.  I wanted to have a joyful wedding and then tell them.  It was a very hard thing to do.

The oncologist wanted John to have a battery of tests immediately before the wedding even started, and John told him "no", that he was going to wait until after the honeymoon.  We had the most beautiful wedding on the face of the earth, and a fantastic honeymoon, and then returned home to reality.

Okay, this entry has gotten long enough for today.  I will finish telling you how John got diagnosed with MDS in the next entry.       

My first entry

This journal is about John. I wanted to keep you all informed about him. It is also about me. I needed a private place to get out my feelings. I have a few close people in my life who don’t accept that I can have feelings, that don’t like me to show feelings; so I am making this journal private so that as I write I don’t feel constantly censored by them, and can write freely. But I wanted to invite each one of you that I have invited. Stay with me if you would like. Or drop in on occasion.

I guess I’ll start at the beginning. John and I met seven years ago, in the summer of 1998. We became very fast friends. Two months later we started dating.

And two months into our beautiful courtship John was diagnosed with Non Hodgkin’s Lymphoma. Stage 3B. I’ll spare you all the details. I’ll just say that he was told it was terminal, but would be given chemo, to live as long as possible, in hopes that a cure for cancer would be found in the meantime. Well, my determined John fought off the Non Hodgkin’s Lymphoma, and has been lymphoma-free for 6 years! He showed those doctors!

But a terrible thing has occurred. The very chemo that wiped out the Non Hodgkin’s Lymphoma gave him a new cancer. Yes, an entirely different, second cancer. It is called Myelodysplastic Syndrome (MDS). It is also known as Myelodysplasia. It is a type of bone marrow cancer.

I would be lying to you if I told you I understood what bone marrow cancer was. I read and reread the definition and can’t understand it. But I am trying to learn as much as I can to help John with his illness, and to help him prepare for his bone marrow transplant he will need in the future. I will write more about the bone marrow transplant soon, but I think this is getting long enough for now.

I hope everyone is in doing ok, love, Krissy