The Big Appointment (Hershey)

Well, John had THE appointment.  The one at Hershey Medical Center that we have been waiting forever to go to to find out how he is doing.  

After getting sufficiently lost we rushed into the Cancer Center and John did some quick paperwork.  Then we were called immediately back into an examination room.  It wasn't more than five minutes before the specialist walked in.  Dr. Claxton specializes in Hematology and Bone Marrow Transplants.  He was so fantastic.  He was very knowledgeable and asked John many questions.  He gave him a thorough examination.  He also explained many things to us.  He told John that he had Myelodysplasia and that it was bone marrow cancer.  Another name for Myelodysplasia is MDS.  Anyway,  he spent one hour and twenty minutes with us!  John said he has never had a doctor spend one hour and twenty minutes with him.

After asking questions and looking over charts and slides, Dr. Claxton got a better idea of what treatment he wanted John to follow.  He decided that John would most likely be able to wait a year or two before having a bone marrow transplant (providing he didn't progress too quickly or he wasn't heading towards leukemia immediately).  He decided to wait until John's counts got bad before he wanted to do the bone marrow transplant.  He said John had low white counts, low red counts, and low platelets, but they weren't super low yet.  He decided he wants to see John back in three months, and then every three months after that.

John also had bloodwork done.  They drew at least seven vials of blood!  The oncologist (Dr. Claxton) ordered some blood drawn to check his blood counts.  They also took some vials of blood to type John.  The results will be used to find a bone marrow donor for John.  Dr. Claxton believes that there is an 80% chance that a donor will be found in those already signed up to be bone marrow donors!  John needs to call Hershey back in about six weeks to find out if there are any donors that he matches.  That will be about September 14.

So that is the long and short of it.  John is glad he doesn't have to get the bone marrow transplant right away. 

Thanks to all of you who have been praying and sending emails.  And thanks Daddeo and Val for coming to the appointment.

Krissy :)  

Please write your congressman

I had a wonderful two days this weekend.  John and I stayed over night at Valerie's and had a blast.  We even did an art experiment and colored with crayons!  What a stress reliever.

Oh, speaking of Valerie, I don't want you all to worry about her.  She hasn't been doing journal entries because her computer barely works.  She hasn't even been able to comment much.  Sorry I didn't tell you all sooner.

I am really concerned about Thursday.  I keep thinking that after the appointment at Hershey Medical Center things will never be the same.  I really don't know what they are going to tell John.  I am nervous.  John is cooler than I am.  He is taking a wait and see approach.  I don't know how he can be so calm.  He has always had that ability. 

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I wanted to know if everyone could write an email to their US Congressman.  It is so there will be funding for John's Myelodysplasia Cancer. To do it, please first find your US Representative (Congressman).  You do it by going to www.house.gov and typing in your zipcode.  Your Congressman's page will come up.  Then email your Congressman.  Please say something like the following:

Dear Congressman _____________,

Please cosponsor the Brown-Bilirakis Bone Marrow Failure Disease resolution (H.Con.Res. 179).

Sincerely,

Your name here

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Finally I wanted to end with a few jokes.

When blondes have more fun, do they know it?

Why do they lock gas station bathrooms?  Are they afraid someone will clean them?

And finally, this one if for my husband John and for Stuart of Speciman Days:

If a man speaks in the forest, and there is no woman there to hear him, is he still wrong? 

Krissy :)

Monday Morning Question

Monday Morning Question:

If you had to pick something that has really enriched your life over the past year, what would you say it is?

For me it would have to be getting married to John.  Being married to him has been such a tremendous blessing.  I can't imagine life without him.

How about you?

This Week's Hunt

This Week's Photo Scavenger Hunt (#34) will be due on Saturday, July 30, at 8 PM EST.

Category:  Take a photo of Something Tiny and a photo of Something Huge

Entries for Scavenger Hunt #33

krspkrmom

sylviam4000 

sarajanesmiles

fasttrack58

mtrib2

photographybymon

SassyDee50

Also see my entry below. 

Thank you to all you who played.  They were really neat.  Krissy :) 

Comfort and Console

For this week's hunt we were supposed to take a photo of something that comforts or consoles us.  I chose two candles.  The first one is my Jesus prayer candle.  I light this when I have especially serious prayer requests.  I have lit it for some of you out there.  The second candle is my Unity Candle from my wedding.  The priest told John and I to light it when we had a prayer request for the other, or when we had something that we wanted prayer for concerning our marriage.  It is very comforting knowing our prayers are going up to God with these two candles. 

What we did for fun

Hi Journal Persons.  Hope you are doing well.  Me, I am hanging in there.  

John and I are sitting here twiddling our thumbs trying to think of something to say.  We wanted to write about something "normal" this entry, not just about his cancer.  Trouble is it has been consuming too much of our lives lately.  

John has had trouble with sleeping and has slept for about 18 hours a day.  He thought it was all to do with the Myelodysplasia (bone marrow cancer) but found out today that it also has to do with some medication that was recently doubled.    

John just asked me how people fared through Dennis.  I said, Hurricane Dennis?  What about Emily?  He said, that's what happens when you sleep too much, you wake up and you are two hurricanes behind! 

John went to the oncologist today.  He got some hopeful news.  There are five types of Myelodysplasia.  His type is called Refractory Anemia.  Out of all the five types, the doctor said that it was the slowest growing type.  It also has the least side effects and the best survival rate.  Thank God for all this.

John has to have a CT scan on Monday.  They want to see if his joint pain is evidenced on a scan.  When he went to pick up the barium, he was asked if he wanted banana flavored or plain.  He really wanted strawberry but they were all out.  So he went for the plain!  He just doesn't like the banana shakes!

John is going to take the CT scans and all the other x-rays and bone marrow slides he has had and take them with him to his appointment at Hershey Medical Center on July 28.  Hershey has one of the best Bone Marrow Transplant Centers in the country.

On Monday John and I went to a meeting for Cancer Survivors and their spouses.  John and I both really liked it.  John met a man who had a bone marrow transplant 15 years ago.  Charlie was told that his cancer was incurable but here he is alive 15 years later!  This really encouraged John.  Another thing we liked about the meeting was there was a real friendliness there (John's words).  I also like the fact that they are big on education and resources.  A woman from the American Cancer Society came and spoke to us during this meeting.  She told us about a big conference that the ACS will be holding on August 6.  We are going to that, and hopefully Valerie will come with us also.        

Now, thinking about something other than the Cancer word.  What else is new?  

Michael has been fiesty lately and has been nipping at John's feet.  He thinks it's a game.  Oh, for those of you who don't know, Michael is not our son, he is our cat.  You can see a photo of him in my All About Me section.

OK, here is something "normal" we did.  We played Monopoly.  John won.  I think we need to get some more entertainment in our lives, lol.

Until next time, love you lots, Krissy :)

Monday Morning Question

Monday Morning Question:

What is your earliest childhood memory? 

Being in my playpen (I am not sure how old I was, but I am sure I was VERY young) and noticing the shapes you could make out of the squares in the netting of the playpen.  I just stared and made shapes and pictures in them for hours.  My Mom said when I was a baby I never cried because I was always looking around and thinking.  

John tells me his earliest memory was when his Mother was going to spank him one time.  He thinks he was three years old.  She went to spank him and he looked at her and said, "Don't spank me today, spank me tomorrow, ok?"  She looked upon him with such humor and pity that he got out of the spanking.

What was your earliest memory?

This Week's Hunt

This Week's Photo Scavenger Hunt (#33) will be due on Saturday, July 23, at 8 PM EST.

Category:  Something That Comforts Or Consoles You

This week take a photo of something that comforts or consoles you.  By the way, a family member or pet doesn't count.  So don't run and take a photo of your spouse.  I know you may want to do this, but I want you to think hard on this one and come up with something else.

Entries for Scavenger Hunt #32

Category:  My Hobby (Or Hobbies)

mtrib2

kokoapuffy1

judypearllove

krspkrmmom

fasttrack58

sylviam4000

sassydee50

These were fascinating entries!  I really enjoyed learning a little more about ya'll.  Don't forget to look at each other's entries!  Love, Krissy :)

John helped write this while he was still awake!

I've been struggling lately.  John sleeps all night and half the day.  At least.  When he is not asleep, he is fatigued.  When he is awake, he is not able to do the things he once did.  He used to do a lot of housework such as cooking and cleaning, because my fibromyalgia kept me from doing them.  Most of it he just can't do anymore.  That means some of it just isn't getting done, because I have fibro and diabetes.  I need to try harder to be able to do more. 

One nice thing is that a woman at a church group I belong to  called me today.  She asked what the group could do for us.  I didn't want to accept any help because, well, I just felt bad about accepting help and thought I should be able to do it all myself.  Most women I told her could manage everything themselves, even if they had a husband who was disabled.  She reminded me that I was disabled also, because I have fibro.

She asked me what I really needed.  Did I want somebody to bring over meals?  I told her if that somebody could bring a meal just one day a week I would be thrilled!  I feel so grateful that they are going to do this for us.  Extremely thankful.  

What else is new with John?  He has been having joint pain.  It has been going on for a few weeks now.  Bone pain goes along with bone marrow cancer.  It hurts him when he walks.  It hurts just about any time.  Mostly in his arms and legs.

When I asked John how he felt about what was going on, he said he often feels that this whole thing is unreal, but only for a few moments at a time.  He says he tries not to think about it too deeply.  If he doesn't concentrate on it too much, but only skims the surface when he thinks about his future, it allows him to deal with the bone marrow disease without being overwhelmed by it.  

Hope this entry wasn't too serious for ya'll.  I will try to have a lighter one for you soon!    

Monday Morning Question

Monday Morning Question:

How did you find out about AOL Journals and come to start your own?  What made you want to start a journal?

I wanted to ask this question because I wanted to know if people found out about AOL journals by reading something about them on an AOL communities page, or through a friend, or another way.  I am just very curious.  I found out about creating a journal through my sister Valerie.  She started one and suggested I start one too.  I thought she was crazy!  I was too private of a person!  She kept bugging me and bugging me, and one day I just gave it a try.

Why did I do it?  That is a good question.  I don't really know.  Anyhow, I am glad I took the step and started a journal.  I am part of the best community in the world.  J-Land is the best!  I don't know what I would do without you guys!  You all have helped me so much and really been there for me.  I love you so much! 

Krissy :)

This Week's Hunt

This Week's Photo Scavenger Hunt (#32) will be due on Saturday, July 16, at 8 PM EST.

This week's category will be:  My Hobby (or Hobbies)

 

Entries for Scavenger Hunt #31

Category:  Purple

madmanadhd 

krspkrmmom

kokoapuffy1

fasttrack58

valphish

photogrophybymon

sylviam4000

gotomaria

Also, don't forget to check out my purple entry in this journal.  Also --

photographybymon did            water

sylviam4000 did                      water   

I hope I didn't leave anybody out.  These were truly beautiful entries this time.  Please check everybody's out, as each person put a lot of work into them. 

Love ya like crazy, Krissy 

Purple

The topic for hunt #31 is Purple.  I almost didn't do this one.  I hunted and hunted and couldn't find anything.  I thought this would be an easy one but it wasn't.

Then at the last minute I remembered my Mom's amethyst quartz.

         

Amethyst:  A purple or violet form of transparent quartz used as a gemstone.

I think this is a spectacular display of God's handiwork!  That is why I bought it for her.  I don't know which one of us enjoys it more! 

Well, have a purpley day!

Hello Journal Peoples.  It has been a few days since I have written an entry.  Let's see, what's new with me?

Hmmm.  Not a whole lot.  I have been doing a lot of the same old same old.  A lot of research concerning John.  And a lot of going to doctor's appointments.  For John and for myself.  

I am going to start finding some fun activities to do so that I can keep my mind occupied and have some fun.  Does anyone have any suggestions?  What do you like to do?

John is feeling alright, except for feeling tired.  He sleeps about half the day.  He is in good spirits as long as he can keep his mind off the bone marrow transplant, but when he thinks about it, he feels sad and concerned (his words).  

John has an appointment with an oncologist at Hershey Medical Center on July 28th.  Hershey is supposed to be especially good at these bone marrow transplants.  Please send up prayers and good thoughts for this appointment. 

Also, remember when John had the kidney stone surgery?  Well, the other day he went for an X-ray, and it showed that the stone broke up into many small pieces.  But he has not been able to get rid of the pieces yet.  They are all in the very bottom part of his kidney!  To get out of the kidney they will have to move upward against gravity.  His doctor wants him to lay on a slanted board with his feet in the air and his head towards the ground.  If he does this fifteen to twenty minutes a day the gravity should help the fragments leave the kidney.  First John needs to ask his oncologist if it will be okay to stand on his head (practically) before he does this treatment, lol.  

Well, that's about it for now.  I will write again soon. 

Love you all, Krissy :) 

Monday Morning Question

Monday Morning Question:

We will make this an easy one for the 4th of July.

What is your favorite food to throw on the grill?

Why steak, of course!  How about you?  

This Week's Hunt

This Week's Photo Scavenger Hunt (#31) will be due on Saturday, July 9, at 8 PM EST.

This week's category will be purple.

 

Entries for Scavenger Hunt #30

Category:  Water

kokoapuffy1

valphish

fasttrack58    entry one
                    entry two
                    entry three 
                    entry four
                    entry five 

kkasey47

fisherkristina                    

Water

The topic for hunt #30 is Water.  I really enjoyed this subject.  Valerie, her son Matthew, John and I went to the park near Val's house and took some photos.  While there we fed the ducks and fish, looked at nature, and generally just got away from it all.  It felt really good!  

   

I like this next one because I like the way the water rippled around the ducks in a circular motion.  

Hope you enjoyed the photos, Krissy :)