Making Progress (John's Choice of Title!)

Time for a John update.  First I wanted to correct something I said in previous entries.  I said that the Non Hodgkin's Lymphoma that John had six years ago caused his Myelodysplasia Cancer.  This is not true.  Non Hodgkin's cannot cause Myelodysplasia.  But the chemo to get rid of Non Hodgkin's can cause Myelodysplasia, we found out.  So it looks like the thing that saved his life and killed off the first cancer caused the second cancer.

Another thing that I said was that John would have to have his bone marrow removed when he had his bone marrow transplant.  This is not exactly correct.  What is going to happen is that they will destroy the bone marrow chemically.  Then they will add somebody else's marrow into his bones.   

Sorry for the gorey details above folks, I just didn't want to be giving you wrong info.

Now on to less technical matters.  NIH called Tuesday and had a chat with John.  After a short period of time they said they were not interested in doing a transplant on him because they are only interested in sibling match bone marrow transplants right now.  And since John has no known siblings (he is adopted) they were not interested in him. 

Now John is searching to find which bone marrow transplant treatment center he wants to have his transplant done at.  When he decides which one, the center will help him find a donor.  This could take anywhere from a few months to three years (to actually never) to find a donor.  

It has been a rough week for me.  I have been doing a lot of research trying to help find which place would be the best center.  There are also a lot of different kind of transplants.  At times I have felt overwhelmed, at times frightened, at times sad, at times my thoughts have just raced and raced.  Through it all I have kept my faith and I do have lots of hope and have been very proactive.  At one point my hopes were almost dashed when I read that there was only a 20% survival rate for someone who had a bone marrow transplant who had John's disease.  Then today I found out that there is a 70 - 80 % survival rate.  I hope that figure is correct.  My emotions are going up and down like they are on a roller coaster.    

John has been fatigued.  He has severe anemia.  He sleeps a lot.  But he also does a lot of his normal activities.  I am very proud of him.  He is a real trooper!  If I were him and I was just diagnosed, I might sit on the floor and cry and do nothing for two weeks!  But not him.  He does housework, drives me to my appointments (I can drive but he likes to!), listens to music, reads - all kinds of things he did before he was diagnosed.   Bless his heart.  

He tries to keep a positive attitude.  I asked him how he does it and he says by not dwelling on the MDS all the time.  I asked him how he did that (because I certainly am not very good at it right now!), and he said to just do normal activities, and if he catches himself thinking about the MDS, to stop, and just start going about doing normal things.  He does it as a CHOICE.  I will have to remember that.  And he also chooses to be positive.      

Well, that's enough for now.  I love each and every one of you lots.  And I want to thank each of you who have emailed me or IMed me.  Or prayed for me and John.  You have helped us more than words can ever express.  Love, Krissy 

Entries for Scavenger Hunt #29

Category:  Summer

krspkrmmom

sylviam4000

promiseluv372

fasttrack58

hunybea4him   did  Something We Don't Know About You

Monday Morning Question

Monday Morning Question (Coming Out on Tuesday Morning!) :

What is your favorite flavor of ice cream?

Coconut Chocolate Chip (with whipped cream on it!)

This Week's Hunt

This Week's Photo Scavenger Hunt (#30) will be due on Saturday, July 2, at 8 PM EST.

This week's category will be water.

Sorry

Sorry.  I tried to post the entries for the last Photo Scavenger Hunt but couldn't do it because I couldn't access the journals.  Too many of the journals were giving me the message:

Sorry, AOL Journals is Unavailable.  Please try again later.

I will post the Photo Scavenger Hunt links to your photos tomorrow. 

Thanks for your patience, Krissy

 

 

So Tired

I am SOOOOO tired that I am going to post the entries for the Scavenger Hunt tomorrow (I will post them sometime Monday) and the Monday Morning Question sometime tomorrow (hopefully by Monday afternoon).  Thank you all for understanding.  I have been so very busy, and now am so exhausted.  

Love ya lots,

Krissy   

One Word

Please leave a one word comment (with your journal addy) that you think best describes me.  It can only be one word. No more.

Then copy and paste this into your journal so that I may leave a word about you...(Stolen from Val who stole it from Christina). 

Love, Krissy   

Follow Up Appointment

I wanted to give you all an update on John.  John and I went to the Physician's Assistant and the oncologist today (Thusday).  The oncologist decided John should get an appointment with a specialist at NIH in DC to find a bone marrow transplant match.  The specialist wants to match John with a relative.  We don't know how this is going to work out as John is adopted.

If John can't find a bone marrow transplant match through NIH, he is going to have to find a bone marrow transplant donor nationwide.  He will be put on the bone marrow transplant registry.

Well, that is about it for now as far as John goes.

I am feeling a little better today.  I am being more proactive.  

Tomorrow we are going to do something fun.  We have two movies that we rented from Holywood Videos.  One is "It Could Happen To You" and the other is "What's Eating Gilbert Grape".  The first one is based on a true story of a man who promises a waitress that if he plays the lottery and wins he will give her the money.  And he does!  That should be interesting!  Anything for a laugh!

Well, gotta run.  All my love, Krissy       

      

Thurs. is appointment

Tomorrow (Thursday) John and I go to the Physician's Assistant (she is filling in for his oncologist) to talk about what comes next in his treatment concerning the Myelodysplasia.  Gee, the whole thing seems so daunting and ominous.  I feel like from this day forth our lives will never be the same.  I KNOW our lives will never be the same.  I want to turn back, turn back.  But there is no turning back.  I want him to get help, but I also want to pretend like none of this is happening, and I just want to turn back the clock.  

I have been having a rough time these past few days.  First I was in shock.  Then I became more positive and adjusted and proactive.  Now I am slipping some and getting a little depressed.  Such a gamut of emotions.  I don't want to be depressed.  It really scares me.  I see myself staring blankly sometimes, just not wanting to deal with things.  Lacking concentration.  I just CAN'T do that, I have to be here to help John get the best care.  And I have to take care of myself also.

It has also been hard because John has been having complications from the kidney stone operation he had last Friday.  And I have had to be by his side 24/7.  We have been housebound for most of the time except we went to the park once, and for doctor's appointments.  It is hard to be in the house all the time!  I need to be by his side every second in case he has to go to the Emergency Room.  And this could go on for another week or two.  Oh well. 

I should make this something else besides just a health journal.  Hmm, let's see what else is new?  Well, my sister Therese woke up this morning (Wednesday) paralyzed from the waist down and was life flighted to a hospital and operated on this morning.  I am not sure of her condition.  Oops, I guess that is another health situation.

Okay, sorry.  I just asked John for some good news to put in here.  He told me to tell you all that his Mom (73 years old) has moved in with his foster sister Darla and is very happy now!  They are very happy together!    

I love life, I really do!  And I love the Lord!  I am hanging in there.  

Well, lots of love to everyone.  I will let you know how the appointment went after I come back from it.

All my love, Krissy           

One More Scavenger Hunt Entry

Here is one more Photo Scavenger Hunt Entry for Something We Don't Know About You:

 valphish

Monday Morning Question

Monday Morning Question:

How many hours a day on the computer would you consider addiction? (Question is from my friend Dan.) 

My answer:  I would have to say four hours.  And I would have to say, unfortunately, that many days I am addicted, lol. 

How about you? 

 

This Week's Hunt

This Week's Photo Scavenger Hunt (#29) will be due on Saturday, June 25, at 8 PM EST.

In honor of the official start of summer, this week's category will be SUMMER. 

Have fun this week, enjoying the sun and snapping a photo or two!

Entries for Scavenger Hunt #28

Category:  Something We Don't Know About You

krspkrmmom

kkasey47

fasttrack58

sylviam4000

Monica   did Beautiful

Please check these entries out.  A lot of work went into them.  Sorry I didn't get mine done this week.  I had a lot going on with getting the news about John and all.  Also, John had kidney stone surgery on Friday and is having some complications (I won't bore you with the details) and I have had to stay by him every second.  So anyway, Lord willing and the creek don't rise I will participate next week.  Until then, happy picture snapping!

Thanks

I wanted to take the time to thank everyone out there in J-Land for your comments, cyberhugs, emails, and ecards you have sent me.  Thank you also for the informative websites you have sent me on Myelodysplasia (MDS).  Thanks for the prayers you have offered on John's and my behalf.  Thanks for asking what it takes to be a donor.  (I will be giving more information about that in the future.)  Thanks for telling me I can IM you when I need to.  

The outpouring of support from J-Landers has been tremendous.  There has never been a better group.  John and I feel surrounded by such love and support.  (Your outpouring of support actually makes me want to cry.)  And we are more armed with information now.  Thanks to you all I have a better perspective today, and don't feel so off kilter.  

Even though today was tremendously hard, John and I did something fun just to forget about everything.  We played Monopoly!  So life goes on.  That is what we are trying to make it do.  We need to start doing some normal things again.  Have some fun.  Hopefully this week we are going to go grilling with my sister Valerie and her daughter Chelsea.  And maybe we will take in a movie or something.  That sounds like fun!

Not that I have given up researching.  I have joined several MDS groups (I am not slow, lol), read allover the net, been conversing with several MDS people by email, chatting with them by IM (they have been IMing me, lol), researching bone marrow transplants and donations, and so much more.  I guess that is why I need to do some fun things.  A spouse can really get caught up in this stuff and not take any time out for herself/himself.  I need to be careful not to do that.  But I AM going to do some research for John.  I want him to get the best care.  I just need to make sure everyday that we are not always focused on MDS and that we have some fun.  And I need to slow my pace down, lol.  Now that I have some initial information in place I can do that.

So thanks again to everyone who has been there for us.  We love you more than you could possibly ever know.

Love, Krissy :)   

Myelodysplasia

Okay, back from the oncologist.  John doesn't have Non Hodgkin's.  He has something else.  Maybe it's worse.  It has a name.  It is called Myelodysplasia.  I don't really understand what it is, I haven't had time to research it thoroughly yet.  It came about as a result of the Non Hodgkin's I believe.  He has chromosome 1 and 7 translocation.  It means there is something wrong with his bone marrow.  That means he is going to have a bone marrow transplant.  Yep, a bone marrow transplant.  Within one to three years.  If he doesn't he will die.  The problem with a bone marrow transplant (and I know this is true - because I heard John and the oncologist discussing it) is that if you reject the bone marrow you definitely die.  The patient has all his bone marrow removed to have the donor's marrow inserted.  If he rejects the donor's marrow, he can't survive under any circumstances, because he has none of his own marrow left.  Just the thought of that is what frightens us the most.  And I also read on one website that even if the bone marrow transplant does take, it only kills the Myelodysplasia 60% of the time.  What about the other 40% of the time?  

Okay, so that is the bad news.  Yes, I know there are lots of positive things to say.  At least I have him for awhile.  Maybe the treatment will work and I will have him for a long while.  Maybe the transplant will go well and will totally kill the Myelodysplasia.  But I am not thinking of everything positive now.  I am grieving right now.  I don't want to go through this right now.  I will accept it but I don't like it.  Please don't give me positive platitudes today, lol.  There will be lots of time for that later.  I don't want to be encouraged and told everything will be alright (because how do you know?), I want somebody to give me comfort, lol.  Not feel sorry for me, just give me a cyberhug or something, lol.  

Well, the next step is we will visit NIH, and also try to find a donor.  The whole process is going to take one to three years to find a donor, the oncologist thinks.  So we are in for a ride for awhile. 

That's it for now.  Love, Krissy

*Edit -  It is now Oct. 12, '06, and I have learned a lot since I wrote this entry.  So I thought I would clarify a few things. 

John did end up having something worse than the Non Hodgkin's Lymphoma (NHL).  He had Myelodysplastic Syndrome (MDS - bone marrow cancer), and if not given a bone marrow transplant (well really a stem cell transplant), it would turn into AML (a type of leukemia) shortly.  Well, he got the stem cell transplant in January of 2006.  It was a success.  It took care of the bone marrow cancer.  So far.  No bone marrow cancer.  No leukemia.  To date.  By the way, it turns out that the cancer WAS  a result of the chemo from the NHL cancer.  The chemo from the Non Hodgkin's Lymphoma caused the bone marrow cancer.  Crazy, huh?  In the end, John decided to go to Hershey Medical Center for the stem cell transplant.   

How is John doing now?  He has had major complications since the stem cell transplant.  Almost every complication in the book.  I guess in the almost nine months since the tramsplant, I would say he has been hospitalized 7 1/2 or 8 of those months.  In the hospital or day hospital.  We have been living in Hershey, PA during that time.  So we have been in Hershey more than at home.     

John's chances of making it through the first year, we were told, were like 60 to 70 %.  He is fighting to be one of those to make it.  He has almost died many times.  But he is fighting to make it.  Right now we are at home, but he is suffering from something called Autoimmune Hemolytic Anemia (AIHA).  It is requiring him to get transfused every five days needing two units (bags) of red blood cells each time.  He gets weak often a few days before needing the blood.  He was in the hospital about a month a month and a half ago (for a month), trying to get rid of or slow down the AIHA.  He was requiring 7 bags of blood a day at first.  He had to be in the intermediary critical care unit for his heart.  It was a scary time because we didn't know if he would live.  Right now he only requires blood once every 5 days, but the doctors are checking it in the next few days to see if the AIHA is coming back.  

Okay, so we have learned a lot through this.  Keep positive.  Keep God first in your life.  Take one day at a time, one minute at a time, it will be the only way you can get through at times.  Don't be bitter.  Never take a single day, a single breath for granted ~ you don't know when it will be your last.  Love each other.  Love all your friends.  Don't be bitter.

Okay, hope I haven't rambled on too long as usual. 

Love you all, Krissy :)   

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

*Edit #2 - It is now May 13, 2007.  I just wanted to update this entry.  John was declared cancer-free on 3/29/07.  Praise God, His wonders never cease!  This was after a scare, when John's doctors thought his cancer was back.  Instead John's oncologist found that the bone marrow cancer (MDS) and the Non Hodgkin's Lymphoma (NHL) were completely gone!  The oncologist is certain that the cancers are gone, because he did extensive blood and genetic testing.

Praise God again, because it appears John's Hemolytic Anemia (AIHA) also seems to be gone.  If not totally, than at least for now.  I noted that the last time I edited this entry, John was requiring blood every five days.  At present he has not had blood since February!  That is three months ago!  John was going to have to have his spleen removed for the AIHA problem but has not had to have it taken out.  Maybe he never will have to have that surgery the way things are going!

John is still having some complications from the stem cell transplant.  He is neutropenic almost all the time now.  Which means his immune system is severely compromised.  He could get a serious infection from dust, dirt, mold anda number of other things.  They tell us it could kill him, but he has done fine so far.  He wears his mask almost all the time.

Hmmm, what else.  John has kidney problems.  25% kidney function.  If he gets down to 20% kidney function he will have to be dialysed.  He will also qualify for a kidney transplant when he reaches 20% kidney function.  I guess I didn't mention in the last edit that he got severe kidney disfunction problems while in the hospital.  This disfunction came about either due to a medicine he was taking or to Graft Verses Host Disease.  He was dialysed in the hospital, and told he would be on permanent dialysis.  But he fought his way off dialysis while in the hospital!  He has been told that he will have to be on permanent dialysis (when he reaches 20% kidney function) in 5 to 20 years.  He is not looking forward to that, but he is taking one day at a time.  Maybe he will never get to the point of needing to be dialysed again.  He is on a strict renal diet (I am making foods that keep the kidney's healthy), and he is doing a great job eating the right things!  I am learning to cook great tasting things from scratch! 

Well, that is about it for now.  You know how verbose I am, I won't go on forever!  Except to say what we have learned:

God is awesome! 

J-landers are our best friends, without them we wouldn't have made it.  Also family. 

Never give up.  Always fight.  Always have hope.

Never get bitter.

Never take a single breath for granted.  Dance.  Right, Tammy? ;)

Take one day at a time, no, one second at a time.

When you have made it through, pull others through too.

Love you all with all my heart, now and forever, Krissy :)    

Tags: Myelodysplasia, Non Hodgkin's Lymphoma, Hemolytic Anemia, Bone Marrow Transplant, Stem Cell Transplant, bone marrow cancer, cancer, dialysis, kidney transplant, transplant, remission, grateful as all get out!

What will be revealed?

So tomorrow (Thursday) is the big day.  The day John will find out if the Non Hodgkin's Lymphoma has returned.  I am going to go with him to his appointment.  For some reason I think everything will be fine.  I don't know, maybe I am just numbing myself.  But I really don't think it is back.  If it is, I don't know what I will do.  It will hit me like a ton of bricks.  I can't say that I won't freak out momentarily.  Not like throw a crazy fit right there in the oncologist's office, but like freak out inside.  I have had numerous people say "Well, it will be easier for you this time if you find out he has it, because you have been through it before."  What kind of crazy statement is that???  To think that he is totally over it, only to find it has returned?  How would that be easier???  To me that is just plain crazy.  I know that I would know what would go on in chemo and everything, but I also know he would go through such suffering.  I just don't want either of us to have to go through that kind of suffering right now.  Actually, I will accept whatever God allows to happen to us, but I don't see how cancer will be easier a second time around.  Okay, enough said.  I am perhaps worrying for nothing, the oncologist might say all is good and well tomorrow.  Anyway, when people say things to help you out, they really do mean well, they just don't know what they are saying sometimes!  

So tomorrow I am also going with John to the hospital to get an X-ray taken in preparation for his procedure on Friday to have his kidney stones blasted.  Since finding out about the kindney stone procedure I have talked to numerous people who have had relatives who have had the procedure.  I don't know if I mentioned it but they submerge part of you in water and then thump you to break up the stones.  They had to do an EKG to make sure his heart was up to par, and take some chest X-rays.  That made me a little nervous.  But my Mom said that was a good thing because they were being cautious about making sure everything was well before they did the procedure.  Anyway, as I was stating, I ran into several people with relatives who had this procedure.  Some of them had mild bruising on their backs, while others had backs that were totally bruised up.  It should be interesting to find out what will happen to John.  And then he could be passing the pieces of stones for up to a week.

You know, I am not as concerned about the bruising as I am about John going under anesthesia.  It is probably silly but I don't like it.  I have been told that I am silly - that it is common to have general anesthesia, that it happens all the time - but I still don't like it.  I guess it is because I feel vulnerable right now because he is going to get the results on whether or not he has cancer tomorrow.  I am perhaps overprotective of him right now. 

Well, that's about it.  I will let everyone know what the results are from the oncologist after we get back from the appointment tomorrow.

Krissy        

Monday Morning Question

Monday Morning Question:

What is something that your mother taught you, that you are glad she did?

My Answer:  To be positive.  

Your answer?

This Week's Hunt

This Week's Photo Scavenger Hunt (#28) will be due on Saturday, June 18, at 8 PM EST.

Show us something that we don't already know about you.  Do you have pink fuzzy slippers?  A teddy bear collection?  A boyfriend or spouse we don't know about?  Snap a shot! 

Show us something that represents you that we don't already know.

Entries for Scavenger Hunt #27

Category:  Beautiful

fasttrack58

kkasey47

springangel235

sylviam4000

valphish

jules19642001

promiseluv372

fisherkristina

Photo Scavenger Hunt #27

The topic of this week's Photo Scavenger Hunt is Beautiful.  I took a few photos of some beautiful flowers.

And this one:

Lest you think I have a green thumb - let me tell you, I didn't grow any of these flowers!  I have a black thumb and kill everything I grow.  These are NOT from my garden!

These flowers are from a garden cultivated by the horticulture department of the college where I live.  They grow and maintain the flowers.  They even experiment and breed their own.  I wish they would give me some tips so I wouldn't have such a black thumb!

Hope you enjoyed the pics!

Until next Hunt, take care, Krissy

Helen Keller, group therapy, and kidney stones!

Wow.  Today was hot and humid.  It was in the 90's.  I just wanted to stay inside all day and do nothing.  I did get a lot done though.  And tonight John and I rented and watched "The Miracle Worker".  If you have never seen it, I would recommend you see it.  It is the story of Helen Keller.

I went to group therapy yesterday.  I mentioned in a previous entry that there were a couple of people that were monopolizing the whole group.  Well, I am really proud of myself.  I brought up to the group yesterday that we should be aware of one another's needs, and not take up excessive time at the expense of others (a polite way of saying not to monoplize).  It was taken really well.  The fascilitators also decided that in the beginning of each session we would all go around and check in and if we had a pressing issue we would get extra time to speak that session.  When it came my turn I told them about John's test results coming up on June 16 to see if he had cancer.  Everyone was stunned.  They wondered why I hadn't mentioned it before.  It was because I couldn't get a word in edgewise, but I didn't tell them that.  At this point they were willing to listen to what was going on in my life.  We all had a chance to share.  The dynamics of the group totally changed.  We even had a topic and problem solving.  I think I am going to like this group.  We just needed time to sort of allow things to fall into place.

Something else that is new is that John has to have shock wave surgery on June 17 to blast  away kidney stones.  He will be going under general anesthesia.  They put part of your body under water.  Then they shock you.  It leaves bruises on your back and hurts for I don't know how many days afterwards.  Then it takes a few days to pass the pieces of stones.  He won't be able to drive for two days.  Anyway, getting the treatment is less painful then trying to pass the stones.  He has one that is a half an inch wide.  Anyway, enough on that topic for now.  I hope that wasn't too much information!

Well, I guess I should go to bed.  Nite Nite J-Land people.     

Monday Morning Question

Monday Morning Question:

What is your favorite Beatles song? 

My answer:  Here Comes The Sun

Which one is your favorite?     

This Week's Hunt

This Week's Photo Scavenger Hunt (#27) will be due on Saturday June 11, at 8 PM EST.

This week's subject is:  BEAUTIFUL

Entries for Scavenger Hunt #26

Assignment:  This week we were asked to find an object:  something we didn't know the name of, or something that we didn't know what it did.  Now let's all go to the journals listed below and guess what these objects are!!  Leave your guesses in the journaler's comments section.

promiseluv372  

sylviam4000

kokoapuffy1

Thanks for taking the time to visit these.  They put a lot of hard work into their entries!

Love, Krissy  :)

What is YOUR Star Wars name?

How to determine YOUR Star Wars name:

To get your New First Name:
1.  Take the first 3 letters of your first name.
2.  Add the first 2 letters of your last name.

To get your New Last Name:
3.  Take the first 2 letters of your Mom's maiden name.
4.  Add the first 3 letters of the city you were born in.

To get your Star Wars Honorific Title:
1.  Take the last 3 letters of your last name and reverse them.
2.  Add the first 3 letters of the make or model of your first car.
3.  Insert the word "of"
4.  Tack on the name of the last medication you took.

My husband John is:  Johhkn Saphi Xoncen of Clozaloft (He swallowed two medications at the same time!).  

I am Krikn Mawas Xonche of Depakote.

And who are you?

Happy Birthday Grace

Today is my sister Grace's Birthday.  Happy Birthday Gracie! 

What can I say about Grace?  She is charming, full of life, lots of fun, and never tires.  She has a fine husband and two wonderful children.  How she keeps up with everything she does I don't know.

By the way, a name has been chosen for the "Name That Flower" contest.  The winner is "Yang Tze" and was submitted by none other than my very own father!  My sister Therese is willing to give away some seeds from other plants she has besides the hybrid ones.  If you would like some, please state so in the comments section.

I was just talking to John and asked him if he had anything to add to my journal entry.  He said that he had an interesting astronomy story to tell that he heard at his astronomy meeting last night.  I asked him why he didn't start his own journal and write about things that interest him.  He said he couldn't do it or he would be working on each journal entry for ten hours a day.  Writing journal entries push his perfectionism button.  He says he would never get anything else done!  Do any of us get anything else done, lol?!!!

Hoping you are having a great weekend, Krissy  :)