update on John

I haven't written since Friday because it has been hectic, to say the least.  As a matter of fact, the past few days have seemed like a big whirlwind, one day quickly blending into the next.  The minutes I have had off have been few and far between.

The reason is because John is quite ill.  They can't find what is wrong with him.  He has high fevers.  Sometimes the fevers do go down a little, but now he has the fevers almost all the time.  Sometimes I get scared, but what are you going to do?  You must keep hope, or you will fall apart.  So I really am ok.

I finally got a room at Hope Lodge.  I looked around for local hotels but they had no vacancies.  Then Hope Lodge called me out the blue and said, "Hurry up and get over here, we have a room for you!"  I ran over there quickly.  I hate to leave John at night, but I need the facilities such as showers, washing machine, etc.  So I decided to go there nights. 

Early this morning (about three hours ago), I awoke with a bad feeling.  It was 2 am.  I felt there was something wrong with John.  So I called up Security for a ride. Security will drive you to the hospital if there is something wrong with a family member who is in the hospital.  So Security drove me to be with John. 

When I got to the hospital, I found John feverish (w/ a high temp.).  He had ice bags on of ice on him.  He had a headache and was achey allover.  This happens every time John gets sick in the middle of the night.  I sense it, and I leave from where I am staying, and and sure enough, I found out he is sick.  Weird how that works. 

Well, John's fever appears to be very low now.  His nurse gave him ice packs and Tylenol, and some IV antibiotics.  That is why I decided to come over to the computer room and write this entry while I had the chance.

Well, this entry has to be short, as I have to get back to John and make sure he is still ok.  If you find mistakes in this entry then please forgive me.  I am a little too tired to correct it.  The next entry I do will be one in which I share more of my feelings and stuff.  But right now I just have to get back.  I just wanted to let you all know what  has been going on. 

Okay, that's it for now.  I will try to get back as soon as I can.  Take care you all.

Blessings,  Krissy :)

Tags: fever, antibiotics, Hope Lodge

John's in the hospital

Hi you all.  Sorry I haven't written in awhile.  I have been cleaning my apartment like a mad woman to make it sterile for John.  He was staying at my parent's house while I did it b/c I didn't want him to get sick while I kicked up the dust and used cleaners like lysol.  I did this because his ANC fell so low that he had almost no immune system.

Well, Thursday, John's immune system dropped to 0.  So that means he did not have an ability to fight anything off.  I knew it would happen.  I knew he would catch something, which he did, by Thursday night.  By the evening he had a fever, and so we came in last night to Hershey Medical Center.  When we got settled into the hospital last night (Thursday night) it was about 2:30 am. 

Today (Friday) John's temperature was 101.6.  He was given a slew of tests to try to determine what is wrong with him.  It could take weeks though to find out why his ANC is so low.  It could be bacterial, fungal, or viral.  I am a little scared but not too scared, b/c he has made it this far.  

So we just don't need to be concerned about him catching something b/c of his ANC and white blood count being low, but also we need to be concerned about why his ANC is low in the first place.  Like what is that indicating?  What kind of illness/or infection is it indicating?

John has been given shots (Neupogen and Neulasta to artifically raise his ANC and white blood count), so it may raise pretty quickly.  But like I said, it won't clear the underlying problem.  The only reason I am mentioning it to you is if he suddenly gets out of the hospital.  But they will be having to take care of the long term problem, whether it is at the hospital, or at home.

So how am I doing?  Well, there are no rooms open at Hope Lodge, for at least a week and a half!  So I am sleeping in the hospital  chair next to John's hospital bed.  Clothes in a bag on the floor.  But there is a washer and dryer that everybody shares in a section of the hospital that I do believe they will let me use, and I think they will let me use the shower too.  And they will let me use the computer, so I am good to go, LOL.  I have to figure out how to get to the pharmacy (a couple of miles away, and i don't know if there is taxi or bus here, we will see), but I should be able to figure that out.  And hospital food it is for me!  Okay, I won't stress, one thing at a time here.

My sister Val learned how to give Michael his diabeties (insulin) shots and showed my mother and father.  My mother has been giving him his shots!   I am so proud of you Mom!  Thanks so much Mom and Dad for giving my cats his shots and taking care of him while we are away!

Okay, must go now.  I must get back to John.  Love you all,

Krissy :) 

Tags: ANC, Neupogen, Neulasta

Mary

Hi! 

Today I am doing a special entry about Mary.  Kellen got the idea that today we should have a JLand May Crowning for the Blessed Mother.  A JLand May Crowning is a special day where those in JLand who would like to participate put something in their journal honoring Mary.  You could perhaps post a picture  and a prayer.  Anything else you want to write is also ok.  If you would like to participate, see this entry in Kellen's journal:

Ascension and May Crowning Instructions

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

I wanted to talk to you about a few things that we as Catholics believe about Mary. 

Catholics believe Mary was Immaculately Conceived (born without original sin).  She remained sinless throughout her life and will throughout eternity.  She did, however, require a Savior, like the rest of us.  His name is Jesus.  Here is what the Catholic Church believes about Mary's salvation:

The Catholic Church does not deny that the Virgin Mary required salvation, for she was a child of Adam like the rest of humanity. Yet, her redemption was effected in another, more perfect manner, namely, "redemption by pre-emption." One can be cured of a disease after having contracted it, OR one can be spared of that same disease by being inoculated against it in advance. Our Lady’s redemption was effected in this latter manner, thus sparing her from ever being under the dominion of Satan.

The Immaculate Conception of Our Lady was solemnly defined and proclaimed by Pope Pius IX on the 8th December, 1854:

"The most Blessed Virgin Mary was, from the first moment of her conception, by a singular grace and privilege of almighty God and by virtue of the merits of Jesus Christ, Savior of the human race, preserved immune from all stain of original sin" (Ineffabilis Deus, 1854). 

Catholics believe we can pray to Mary (and others who are in Heaven) and ask her (and them) to pray for us. 

Okay, I am getting a little long here, so I am just going to give you a reference page for this one.  Please check this out!

Praying to the Saints

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

Finally, I wanted to leave you with a short video.  It is about how one Catholic Church celebrates the "May Crowning" or "Coronation" of Mary.  This celebration takes place in May, and is celebrated in many Catholic Churches in America and around the world.

May Crowning at St. Mary of Czestochowa Church in Cisero, Illinois

Well, I guess that's enough to chew on for now!  If you have any questions at all you would like to ask me, please feel free, and I will do another entry!  

Love you all, Krissy :)

Oh, I forgot to say, to see the other Jlanders who have participated by making a "May Crowning" entry, stop by Kellen's journal, Faith in Roman Catholicism!  Kellen will list the other journals who have participated.  Please visit these journals!  :)

Tags: Blessed Mother, Mary, Immaculate Conception, praying to the saints, Mary Crowning, adult Catholic convert by choice!

monday morning question

                   

Can you fall asleep if you can hear a mosquito in your room?

My answer:  Mosquito yes, bee no! 

What's your answer? 

Tags: monday morning question

to you Moms out there...

                          

Wishing a Happy Mother's Day to all of you Mothers out there! 

This is kind of a hard day for me.  No children.  Having children has been one of the biggest desires of my life.  It just wasn't meant to be, I guess.  Probably never will be, with John's transplant and chemo and all, making it impossible for John and I to have kids.  I know it is not practical for me to have kids, because I have to be at the hospital with John a lot, and I wouldn't be able to take a baby with me.  That doesn't mean, though, that I don't get very sad at times.  

The past couple of days have been extra hard because people have been emailing me Mother's Day cards.  Can't imagine why, LOL.  If you were going to, you can refrain, LOL.  It will just make me sad!  At any rate, enough on that topic.

All you mothers out there, have a great day!  Hug your children!  I am sure you realizr your blessing.

All you children, be extra good to your parents.  Give them a hug or a phone call.  I KNOW you realize your blessing.

Love and blessings, Krissy :)     

Tags: Happy Mother's Day, Mother's Day

The photo hunt has temporarily moved to Val's journal

        

Attention Please: 

The Photo Scavenger Hunt will be hosted at Val's journal, There is a Season.  She has graciously agreed to do it for awhile.

I hope you all understand that I need to take a break from the Photo Hunt for a little while, considering how swamped I am in my life right now.  I am sure Valerie will do an excellent job though!

She has already done an entry listing the next Photo Scavenger Hunt subject.  Please stop by her journal and check it out.  And please put Valerie on your alerts.

There is a Season 

Tags: Photo Scavenger Hunt, Photo Scavenger Hunt With Krissy, There is a Season, Thank you Val!

Giddy

Hello, my J-Land!

Woohoo!  I did something really exciting yesterday!  I drove for the first time in about six months!  It was just down a couple of streets to get some money orders, but nonetheless, it was driving!  I haven't driven in about six months because of the narcolepsy.  I didn't want to fall asleep at the wheel and kill somebody.

It looks like the narcolepsy medicine is working.  I still fall asleep occassionally though, and John thinks it is because I haven't gotten the CPAP machine yet for the sleep apnea.  My friends claim I am a new person now.  That I am alive, awake, and "giddy".  That I have a new personality since I started the narcolepsy medicine.  They keep calling me "giddy".  I don't know if I like that description, LOL.  Well, I guess I could be called worse things...

Let's see, what else is new besides me driving again?  John has gone severely neutropenic again.  He has been neutropenic since he was in the hospital around Easter.  But he almost got better last week.  But this week his white blood count and neutrophils have severely plummeted again.  He has a severely compromised immune system again.  But you know what?  He doesn't seem to be catching anything or getting sick.  So that's good.  No, it is great.  And, I personally would say miraculous.  What are the odds that he would be immunosuppressed all this time and not get real sick any more?  This is something else!  Miraculous perhaps?

I will say this on a good note about John.  When he went in to get bloodwork done yesterday, they remarked how well he looked, and how great his color was!  One of the phlebotomists (the person who draws your blood) said to John, "Before you could have just gone to any corner in here and curled up and taken a nap.  Now you are doing ok!"  Great, huh!

Well, that's about it, except to say that I finally feel like I may get caught up on the things I have to do around the house.  Someday.  Maybe.  LOL.  I did a bunch of things yesterday, from 5 am till midnight.  I saw how much I could do and it made me feel good.  Maybe I WON'T be behind forever.  Yesterday, I of course didn't get a large chunk of everything I needed to get done in the house.  I think that will take months, but I can see that doing this is actually feasible, and I am not so overwhelmed anymore.  I may actually at some point get caught up on my housework and paperwork, LOL.  Yesterday the maid and I did four hours of work together.  That made me feel real good.  She is a hard worker.  We got the house a lot cleaner for John.  

Okay, must run, hope you are doing well, J-Land. :)  I know some of you are going through some very rough times, but keep hanging in there.

Krissy :)  

Tags: narcolepsy, neutropenia, giddy!

Michael has diabetes

A lot has gone one in the past two days. 

Michael, the best cat in the world, has been diagnosed with diabetes.  Now I have to give him insulin shots, and I am scared.  John and I went to the vet yesterday to learn how.  Why should I be scared after playing nurse to John for a year and a half?  Don't really know, but I am.  I can't let John give the shots because he is neutropenic, and if he accidentally sticks himself he will get sick, according to the vet.  Okay, so I will learn to do it out of necessity.

On to another subject, John and I had our second wedding anniversary on May 7.  It was beautiful.  Very quiet, just the two of us.  We ate together.  We didn't have enough money this month to buy each other a present (Michael is expensive, LOL). But next month if we can afford it, John is going to get me a watch.  And I am going to get him a hat that will keep the sun off of his face and some of his body.  No, not a sombrero, LOL.  Just something large enough to keep some of the sun off.  You see, when you get cancer and have a stem cell transplant, you have to wear hats and long sleeve shirts after that, even in the summertime.  Because you become susceptible to secondery  cancer.  That would be a shame if John had to try to fight off a third cancer.  Anyway, I have seen some cool hats.  I saw some Australian ones I liked.  

Let's see, what else is new.  John was given an award by a local cancer survivors' group.  He had been awarded it previously, but never got to pick it up because he had been in the hospital for over a year.  So he finally got to pick it up yesterday when he went with me last night to a meeting of the organization.  I am a board member of the organization.  Anyway, the award reads as follows: 

The Third Annual Janet K. Bowman Spirit Award 
Presented to
John Knox
For his positive attitude
persistent inner determination,
and unending effort
as he walks his Journey
Cancer Survivors' Association, Inc.
November 20, 2006

It is the most beautiful award I have ever seen, a beautiful plaque, and beautiful because the words are so true!  His persistent determination and unending effort are what amazed me as he walked his journey.  As well as his positive attitude!  I have always been so proud of John!

I just mentioned me being on the board of this cancer survivors' organization.  Well, I finally got to go to a meeting after not being able to go for over a year.  Didn't know if they would still want me, LOL.  They did.  I am pretty excited because they have a job for me.  They have something called "Let's Talk" meetings.  In these meetings speakers come in and speak.  I was asked to get speakers, or come up with topics and somebody else would help me find speakers in the community to speak on the various topics.  I am very excited about this, because I have a lot of good ideas.  Also, I am thinking that some of the best speakers will come from cancer survivors, and caregivers, right here in the cancer survivor group.  Who can say what is going on better than they can?  So they could each speak on a different topic.  I was asked to write down some topics, and last night I brainstormed with John.  We came up with 22 topics, LOL.  

Okay, I could write all day, but this is getting too long.  I will stop now, LOL.  

Love you all lots, Krissy :)   

Tags: feline diabetes, wedding anniversary, award, cancer support group

monday morning question

         

Do you dance crazy when no one is looking?

My answer:  Yeppers, LOL.

What is your answer?

Tags: Monday Morning Question

I'm still here

I've been so busy lately.  Now that John is out of the hospital and not as sick, I have been trying to catch up on almost two years of housework and paperwork.  It is very daunting.  I know - I just need to take it one day at a time, one item at a time.  But it is still daunting and somewhat overwhelming.  It is taking up so much of my time.

John has been doing better.  He is not as weak.  He no longer has fevers. 

The appointments with Dr. Claxton went well last week.  John's main problem is neutropenia.  John has been neutropenic since his hospitalization right after Easter.  Dr. Claxton said some patients have recurring neutropenia after bone marrow transplants for the first few years.

Neutropenia, if you have been reading this journal for long, means one has low neutrophils, which causes one to have a very comprimised immune system.  One can die if they are around dirt, dust, mold, etc. 

One awesome thing is that a cleaning agency that is helping me out once a week for two hours (at no cost to us) is going to put in two more hours a week to clean!  The head of the program knows what it means to be neutropenic and that the house must be as sterile as possible.  Unfortunately, her brother-in-law had a bone marrow transplant, but died from leukemia anyway.  She called me up on Friday and said she wanted to offer the services for John, to help get the house more sterile.  What a blessing.

Okay, at the fear of making this too long, I will just mention one more thing.  I wanted to mention about my sleep.  The Narcolepsy medicine seems to be working.  Sometimes I still fall asleep, but I think it is because I need to start my Sleep Apnea machine.  Last night I went for my Sleep Apnea test, and slept all night at the hospital, to get the CPAP machine adjusted for the proper air flow.  I will get my actual machine in a week or so.  It was not a bad experience at all, like some people say.  I actually liked the extra air I was breathing! 

Well, I better get off of here, I am going out with some girlfriends, yes taking a break, having a life!  Feels nice!

Love you all, Krissy :)

Tags: housework, paperwork, neutropenia, narcolepsy, sleep apnea, CPAP machine, girlfriends, having a life