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 :)