this entry will make you shout for joy!

Hmmm....  How do I do this without coming right out and telling you?  So I will.  Here goes...

John's cancer is not back.  And he doesn't need a second bone marrow transplant.  Yes, that's right.  He is cancer free!

Let me tell you what happened.  Yesterday at the appointment with his hematologist/oncologist, Dr. Claxton, John was told that the last test he had been given had resulted in a false positive. 

Dr. Claxton came in the room all beaming positive, and excited.  John and I were confused, and then he announced the news.  John almost fell out of his chair.  We were both in shock.  We were happy, ecstatic, but in shock, LOL.  It's like going from death to life. 

Anyway, what happened was this.  When the first test (a bone marrow biopsy) was taken three weeks ago, John was given a drug called Neupogen to stimulate white blood cells to keep his immune system up, right before the test.  This effected the test and produced a false positive.  

Dr. Claxton is positive it is a false positive and that the bone marrow cancer is not back.  There is a reason for this.  There were two other tests done at the same time as the biopsy.  One was something called a Mixed Chimerism test.  In that test it was determined how much of John's cells were his, and how much were cells he got from his donor (during the transplant).  The test showed John is 100% donor! 

The next test was taken to see how much chromosomal damage John had.  When he had the bone marrow cancer before his bone marrow transplant, he had major chromosomal damage, which indicated severe bone marrow cancer.  When he had this final test taken three weeks ago, a sample was sent to the MAYO Clinic.  It was determined by them that John NO LONGER has chromosomal damage!  Thus, no bone marrow cancer!  

So they are sure the cancer is gone!

John does still have the Hemolytic Anemia, which he does require red blood cell transfusions for, but we will take that one day at a time.  What the treatment will be, whether chemo or spleenectomy, we will see.  Right now we are just rejoicing over the fact that the cancer is gone.  He also only has 25 - 30% kidney function, but he can live on that for now.

So God is good.  And you all are too.  Thank you for your prayers.  And thank you for everything.

I told you you would shout, LOL!

Love you all, Krissy :)  

Tags: I can't believe he's going to live!, Here's our miracle!, Cancer you can't get us!, blogplugs

stuff

Hello you all. 

Just wanted you to know I am not going to be around much this week. 

Monday night and Tuesday I am finally going to get my sleep study done.

On Thursday and Friday, maybe even Saturday, John and I are going to Hershey Medical Center (hospital) to see Dr. Claxton, John's oncologist.  John will get some more tests, and we will be discussing things with the doctor.  So please pray.  Some of the tests came out a little fuzzy last time, because John had been on something to increase his white blood count.  So the staging of the cancer is unclear.  John also wants to ask Dr. Claxton if he agrees with what the nephrologist (kidney doctor) here at home has told him about kidney failure, and his bleak future.  John has also set up an appointment in Hershey with a nephrologist on April 11th, to again discuss what the doctor here has said about his prognosis.  Because the doctor in Hershey is probably even more of a specialist than the one near home.  I will keep you all updated on what happens.

So that is how my week will go.  I will have very little computer time.  

I wanted to let you all know that the postings for this week's Photo Scavenger Hunt will be at Val's journal:  There is a Season.  She will also do next week's Photo Scavenger Hunt, so please visit her journal.

Oh, and thanks for the comments in the entry entitled "what do you need?".  I liked your honesty and candor.  And your ideas.  I care about what you think.  

Tags: Sleep Study, Photo Scavenger Hunt with Krissy

monday morning question

         

If you could go on vacation right now, but it would have to be one of the folowing, which vacation would you choose - whale watching, skiing, snorkeling, spelunking (caving), or a safari?

My answer:  the safari!

What is your answer?  Please leave your answer in the comment section below or answer in your journal and leave a link in my comment section.  Thanks, Krissy :) 

Tags: Monday Morning Question

what do you need?

Hello jLand.  I realized my entry the other day was kind of sudden for you all.  I also realized after reading it that I wrote down what I was hoping from you, without asking about what you needed.  So now I want to do just that.  I want to ask you:

What do YOU need?

Is there anything you want to know?

Is there anything you want to ask?

Is there something you want me to write about?

I realize you were hit all the sudden with this news.  Do you need time to grieve for awhile?  Silly question, huh?

Was I insensitive for coming right out and saying something?  I didn't want you to find out suddenly later.

Is there something I can do to make things easier for you all?  Probably silly question again, but if you can think of anything, let me know.

Please don't say that I shouldn't even be thinking about you all, that this is about just John and me.  Because it's not.  John belongs to you all too.  That's the way we feel.  You have been routing for him for a long time.  You love him too.  So we all hurt together, and rejoice together, and learn together.

So what can we do for you?  

Krissy :)

thanks for your suppport

                                         

I put in this beautiful graphic because it reminded me of Spring.  But it is kind of funny.  It was about 23 degrees this morning, and right now there is still snow on the ground!

I can't wait for the big thaw!  I heard tomorrow would be much warmer though.  Maybe in a couple of weeks we can actually go on a picnic.

So, wow, I have been so busy lately.  I feel like I will never get caught up.  Cleaning, paperwork, everything.  Feeling a little overwhemed over here.  I will just have to take it one thing at a time.

I wanted to say thank you all for the wonderful support you are giving John and me.  I can't begin to tell you how much it means to me.  More than you can EVER know.  You all mean the world to me.  I don't know how to express it, just know that I love you all, and want to say thank you.

I guess I will be short for once, LOL,

Krissy :)     

this entry will make you cry

Today was a hard day. 

I want to tell you guys about it.  Part of me doesn't want to tell you, because I don't want you to be sad.  But I believe I should, because if something happens suddenly later, and you don't know, I believe it would be wrong.  You should have time to prepare yourself, to let things sink in.

John and I visited the nephrologist (kidney doctor) today.  John wanted to see him before we were to see Dr. Claxton (who we see in a couple weeks) because he had some questions about his kidneys and how they would react with a bone marrow transplant. 

According to the nephrologist, John may not even have a choice whether he is given the option to have the bone marrow transplant, as his kidneys are so damaged.  Yes, the doctors may not even allow the transplant to be done.

And if he does go ahead with the bone marrow transplant, the nephrologist is not giving him a long time to live, with his kidney damage.  He will have to go on immediate lifetime dialysis, which will cause problems for his longetivity.  A lot of people can live a long time on dialysis, but not those who have just come off a bone marrow transplant. 

I could explain to you why John would not live long on dialysis after a bone marrow transplant, but I am not going to.  I'll spare you, as I am sure you are in grief right now.  Just suffice it to say that the nephroligist explained it to us. 

So what am I hoping?

That you don't disappear, and that you still support us.

That you not be disappointed in John, and think he has failed you. 

That you don't leave John alone in his hour of need.

You don't need to pity us, we are fine.

Please don't tell us that if we just had enough faith, John would be healed.  We are Christians and know that John could be healed, but often Jesus chooses to heal in Heaven.  Everybody dies, and if that is the way that The Lord chooses to do it, then who are we to argue?  If that is the way things progress, then do not tell John or me we are lacking in faith.  Thank you.

Please allow us to be human.  Some days we cry, some days we laugh.

We do not mourn like those who have no hope, we believe John has a place in Heaven.

I hope that you will continue to still support and love John.  He still has so much more that he would like to give to you.  I don't know about you, but his courage has inspired me.  So has his ability to go on, no matter the situation.  After the news today he came home and did the dishes of all things!  There is so much that he has taught me, and there is so much more he wants to give to us through his example.

And what he says is most important to him is that others keep giving blood.

Sorry if I made you cry.  I know this was unexpected, and you weren't prepared. 

I love you all more than ever,  Krissy

Tags: too sad for tags

monday morning question

         

Which words did you mispronounce as a child?

My answer: 

I said TOMATO for TORNADO.  I remember when I was about five years old, and the wind kicked up.  The leaves were swirling around in a circle.  I got all excited and shouted, "The tomato is coming!  The tomato is coming!"  I couldn't figure out why the adults were laughing!

I also said SAMMICH when I wanted a SANDWICH.

How about you?  Write your answer in the comment section or write it up in your journal and leave a link in the comment section.  We are looking forward to your answers! 

Love you all, Krissy :)

Tags: Monday Morning Question, The tomato is coming!, sammich

the Irish side of my family!

                                 

As it is St Patrick's Day, I thought I would take this time to tell a little about my Irish heritage.  This is an accounting that I got from my Mother. 

Most of my relatives that came from Ireland came around 1840 or after.  Most came from Mullingar, which is in County West Meath.  County West Meath is in the middle of Ireland.  One relative came from Multyfarnum.  Some of the family names were:  Mahon, and Mulvaney.

Other Irish relatives were Gallagher, McCarthy, and Collins.  They came to New York and settled there some time before 1912.  Most of mom's relatives settled in New York City.  Her relatives are buried in Calvary Cemetary which is in Long Island, New York City.

 

The Irish are on my Mother's side.  

 

My Great grandmother's mother was Anna Mahon.  She was a hat maker for the theatre in New York.  She could sew anything.  She would go to the store, see something and make it.  She was in the choir where my Mom was married - Our Lady of Perpetual Help. 

 

My Grandmother's mother married Christian Stemple.  He was German.  He died when he was 39. 

 

They had my grandmother (Grandma Chrissie - my Mom's mom).  She was fourth generation Irish.

 

Because Grandma Christine's parent's died so young, she was raised by Mom's Great Aunt.  Her name Marcella Mahon.  She was my Mom's grandmother's sister.  She was always in Church.  She was in a third order and wore a habit.  She raised Mom's mother.  She had a junk shop.   Mom's grandma died when when my Grandma Chrissie was only 14, and Mom's grandfather when Grandma Chrissie was only a baby I think.  That is why Marcella had to raise Grandma Chrissie.  Eventually Marcella retired from the junk shop.  She died at age 80.  She paid everybody's rent and bought them food.  Margaret, another sister, was called Nanna.  Margaret owned an orchard in Staten Island.  

 

My Mom went on the Staten Island Ferry over 100 times.  She was a scaredy cat to do it, but she did it anyway.  She did it to get to Staten Island to see Margaret Mulvaney (used to be Mahon) and Nancy.  Nancy was Margaret's daughter.

 

Nancy Mulvaney married Bill Dudley (English).  Nancy was a good nurse.  Nancy was my Grandma Chrissie's closest person.  Nancy and Bill had three children.  Francis (Franny), Bill, and Marguerite (a nurse).

 

Margaret had another daughter.  She was Nancy's sister.  Her name was Mabel Mulvaney McCarthy.  She married a McCarthy from County Clare.  They had two sons, Jack and Vincent.  My mom says Jack and Vincent were very special people.

 

Margaret's son, and Nancy's and Mabel's brother was named Jim Mulvaney.  My Mom describes him "as a nice guy that showed up once a year".  He lived in the bowery.

 

Getting back to my Grandma Chrissie, three of her children married Irishpersons.  My Aunt Chrissie married Eugene Gillis and became Christine Majorossy Gillis.  By the way, my Aunt Chrissie is my Mom's identical twin sister!  My Uncle Bill Majorossy married Teresa Daly.  And my Uncle George married Clare McNamara.

 

Now a little background on my Mom.  She grew up in an all Irish neighborhood.  She had many Irish friends.  Her Mom (Grandma Chrissie) had all Irish friends.   

 

My Mom's favorite Irish dance was always:  The Stack of Barley.  This was a common dance when my Mom was a teenager.

 

My Mom's favorite Irish song is: The Irish Colonial Boy.  She said it was sung every time the Irish have a party, sort of like an irish anthem.

 

My Dad also wanted me to throw in that his Aunt Ida and Uncle Pete Walsh (Pete being the Irishman in the family) raised him for awhile after his Mom died.   Pete was very Irish.  They owned a theatre and a hotel.  Pete was a drinker.  Pete introduced my Dad to wine.  My Dad is sober now though.

 

I know that this account is kind of choppy and has holes in it.  But I thought I would at least try to do it for my family.  Mom, if you see mistakes, please let me know!

 

Erin Go Bragh!

 

                     

 

Tags: Irish Heritage

A support tag for John

I just got back from the hospital with John.  He got an IV antibiotic treatment for the infection in his arm.  He has three more Vanco treatments to go.  Yesterday he had his 16th chemo treatment.  Hopefully he will get a break from that for awhile.  We will see. 

I want to thank everyone for their wonderful support they have given John.  Chris made John a support tag: 

                                         

I put it in my Sidebar (All About Me Section).  If you would like, you can put it in yours also.  It is to remind others to pray for John.  Maybe you could write something like this under it:  Please pray for John.  He is fighting cancer.  

If you would like you can also link it back to this journal.  Linking back is easy.  To do it all you have to do it this:  Hit the Edit button under your All About Me Section.  Add the graphic.  Write whatever words you want to write under the graphic.  Then highlight the graphic.  Do this by passing the cursor over the graphic from right to left.  When it is highlighted, reduce your journal for a second, put it at the bottom of the page.  Then go to the journal or journal entry you want to link to the graphic (for instance, if you want to link "SometimesIThink" to John's graphic, go to SometimesIThink journal).  When you are at this journal, copy the address that is in the browser.  Do this by right clicking and selecting "copy" OR "select all" then "copy".  Then X this journal out.  Come back to your All About Me Section.  Click on the little globe (which is next to the camera, which is next to spell check).  Paste the address in the "Script Prompt" by right clicking (go down to paste and then right click) and then hit OK.  Then press Save.  This should take you out of your All About Me Section.  The graphic should now be linked to whatever journal you linked it to.  Try it out!  I hope this explanation helped somebody out!

By the way, if you check out my All About Me section, there are two other cancer survivor tags (one for Sugar and one for Jeannette) that you can also snag and put in your sidebars if you would like. 

Thank you so much Chris, for the tags you have been making for survivors.

On another note, my sleep test was cancelled once again.  Grrrrrrrrrr.  Don't know if I have apnea, narcolepsy, what.  And there may be some insurance issues I have to work out now, as well as where I will take the test.  Gee, this thing has bee rescheduled so many times.  Last time it was because I was in Hershey.  Time before that was because of a humongous snowstorm.  Speaking of snowstorms, it is supposed to snowstorm again tommorrow, LOL.  It has been like 75 degrees lately, but the temp suddenly plummeted today.  I can't wait till Spring really arrives.

Okay, must run, Love you all, Krissy :) 

Tags: cancer, support tags, chemo, Spring

photo scavenger hunt

I wanted to speak a moment about the Photo Scavenger Hunt.  First, I wanted to apologize that I hadn't posted the Blue entries for such a long time.  I wanted you all to know that my sister Valerie did post them in her journal, There is a Season, yesterday.  Please go to her journal and check out all the entries.  They are extra special this time.  And please leave comments to the participants.  They worked so hard.

Also, in Val's journal, There is a Season, you will find the subject of the next Photo Hunt.  I think you will find it fun.  The time limit will be extended on it because it is being given so late in the week.  It will not be due this Sunday but next Sunday.  Go check it out!  

Thanks everybody, for hanging in there while we switch around journals a little bit, as I have been so busy, and Val has agreed to help out.  And thanks, Val, for so graciously agreeing to help out!

Krissy :)     

Tags: Photo Scavenger Hunt With Krissy, Photo Scavenger Hunt, photography, There is a Season

you're how old?

                             

It's my birthday!  Looks like I am 29 again!  No seriously, age doesn't matter.  What matters is what you do with today, what you make of it.  Today is the first day of the rest of my life, and I am going to make the most of it! 

Last night I had my birthday dinner with John, because I have to go to a meeting tonight.  John made me some barbecue chicken and zucchini.  Then we had some butter cream cake.  And some canoles, LOL.  Earlier in the day my Dad took me to Chinese.  It was a great day.

John has made today special for me also.  

Tomorrow night is my sleep test.  It will last from 8:30 PM on Wednesday until about 8 PM on Thursday.  That is going to be a long test!  If I am not around, you will know why.

Okay, I've got to go, love you all, Krissy :)

Tags: birthday, barbecue chicken, sleep apnea study

monday morning question

         

Have you ever hung anything from your rearview mirror?

My answer:   fuzzy dice.  No, just kidding!  A rosary.

How about you?  I'm curious to hear your answers.  Krissy :)   

Tags: Monday Morning Question, fuzzy dice, rosary

A long day

Gee.  It is late Friday.  Really it's early Saturday morning.  I'm hungry but there's really nothing to eat in this house.  I didn't have time to go grocery shopping today.  That's because I went to the local hospital with John instead.

Just another little setback.  About three days ago John found this big lump in his arm.  It turned out to be an infection under the skin.  At any rate, it has been giving him a fever for a week or two.  We thought the fever was this cold or bronchitis he has been trying to kick.  But it turns out it is this infection he has on his arm, which is causing this giant lump on his arm. 

Well, after hearing about the lump from John's local oncologist on Wednesday, Dr. Claxton had his nurse call John today and tell him that he would need an IV antibiotic.  John was told he would get the Vancomycin (IV antibiotic) at our local hospital every other day (that's 7 doses) for the next 14 days.  All of this will take a big chunk of time out of our schedule, because it takes several hours a day for John to get the IV. 

The good thing about it though, is this time I won't have to be doing home IVs!  I have had to do those in the past.  But the insurance company wants the IVs done in the hospial.  So I am excited about that!  From now on they will either be done at the local hospital or the hospital in Hershey.

So John had a fever of 100 degrees today.  That's not that high, but when he gets a fever, it usually spikes quickly.  I have to watch him this weekend and make sure it doesn't go up too high, or we will have to take him to Hershey Medical Center.  I will have to clean the house this weekend, and pack in preparation of us going, just in case.  

I am kind of tired, but what are you going to do?  You do what you have to do.

By the way, the spleenectomy John was going to have has been cancelled.  Dr. Claxton didn't say exactly why he cancelled it the other day, but he did say it had something to do with John having the transplant instead.

The spleenectomy was to stop the Hemolytic Anemia.  Since it is not going to be resolved immediately, that will mean more frequent transfusions for John.  Also, as the MDS gets worse, there will also be more transfusions.  I am wondering how often John will have to be transfused.  

Okay, so that is the picture.  No, we are not negative.  I am just saying what is going on.

Oh, and Dr. Claxton wants to continue John's chemo.  I am not sure for how many more weeks.  He has already had it for 15 weeks in a row.  Well, there were some spacers in there.  The chemo should stave off the Hemolytic Anemia some and hold back on some of the transfusions.  Sometimes I worry about chemo brain.  Actually, all the time I worry about it.

Amidst all this we do go on and have a normal life.  We have fun together, talk, do chores, go to appointments, watch the news.  Today I went to the craft store and found a hobby.  I can't quite tell you all what it is yet, because I am going to make a couple of presents.  When I am done with them I will take photos of them, and post them after I give them as presents.

Okay, I have to go, You All.  Live big!  I am listening to "I Hope You Dance".  I hope you all dance!  

Love you, Krissy :)

Tags: cancer, chemo, bone marrow transplant, stem cell transplant, Hemolytic Anemia, I Hope You Dance

Inter view with John

Hi you all.  Sorry I haven't written in awhile.  I didn't mean to worry anybody.  I guess I have gone through a little time of getting my bearings.  I am doing much better now though.  I still go through a lot, but am coming into being okay.  I will do what I have to do to be okay. 

Below is an interview I did with John, so you all would know how he is doing.  He preferred to do it this way, as it is easier for him than to write something.  So here we go.

Krissy:  How did you feel when you found out the bone marrow cancer is back? 

John:  Uhmmm... I am doing alright.  I am not upset about the MDS coming back.  I'm disappointed.  I'm a little frustrated.  When I first got the news my reaction was mostly surprise because Dr. Claxton had told me it had a 10% chance of coming back in my lifetime, and then like a month later it is back.  So... uhmm... I think I am taking it pretty well.  I am not depressed, or anxious, or even worrying much about it.

It's like "John gets a Bone Marrow Transplant Part 2".  Only this time I have to worry about my kidneys.

Krissy:  Explain that please.

John:  Well, while recovering from this last bone marrow transplant, the one immunosuppressant drug damaged my kidneys so they shut down completely and I had to go on dialysis for two weeks.  Then the kidneys came back and now function at 20%.  Whatever happens this time I have to make sure they don't dame my kidneys, because I don't want to be on lifetime dialysis.  Things that could hurt my kidneys are chemo, medications... and I don't know what else.  I need to talk to my nephrologist about it. 

Krissy:  So here is a deeper question for you.  What inspires you to go on, John?  I was inspired by your answer to the first question.

John:  I feel like I have no other choice but to go on.  The... uhmm... only other option is to give up and die.  And uhmmm, I think I am just too stubborn to quit!  I have had people tell me my stubbornness is a fault, but there have been many times in my life that it has served me quit well.  And I think having cancer has been one of those times.  There have been times with cancer, and the complications, especially the complications, where it seemed to me like I was up against so much that I might not survive.  But uhmm... my stubborness was the only thing that got me through.

And Krissy's support, because she was always there.  And always standing there bye me.  That counted for a lot.

Krissy:   Thanks John for sharing today.  Can I interview you again in the future?

John:  Sure you can.

Tags: interview, bone marrow transplant, stem cell transplant, bone marrow cncer, MDS, Myelodysplasia, Myelodysplastic Syndrome, kidney failure

monday morning question

         

If you could go back to school and get any degree you wanted, what would you choose?

My answer:  something in Religion or Psychology

What's your answer?  Krissy :)  

Tags: Monday Morning Question

it looks like John's cancer is back

This is going to be short. 

Dr. Claxton called John and me tonight (Friday) at home to tell us that the MDS is back.  Yes, John's MDS (bone marrow cancer) has returned.  At least Dr. Claxton is almost positive.  Sure enough to call us and tell us it is so.  He said he discovered it from the bone marrow biopsy he did on John Tuesday of this week.  Dr. Claxton is waiting for the results of two other tests to pinpoint things more exactly.  Those results will be in within the next two weeks.  Dr. Claxton said we would then "take it from there".  He said John is going to have to have another bone marrow (stem cell) transplant. 

Gee, I am numb.  Maybe that is good.  I don't think I want to feel too much right now. 

I do have some sadness, but it is for John.  Somehow it doesn't seem right that he has to go through this again.  I wish for his sake he didn't have to.  I do know that the Lord will get us through.  I know there are reasons for everything.  But part of me just wishes he could have a break.

I want to ask for prayers for John, but that makes me feel selfish, because I ask far too often.  I ask for prayers for healing for him, but foremost, God's will.  And most of all I ask for peace to reign in his soul, and that he not be afraid. 

Thank you and I love you all,  Krissy

Tags: MDS, Myelodysplastic Syndrome, cancer, bone marrow cancer, bone marrow biopsy, bone marrow transplant, stem cell transplant, prayers