We have a tentative discharge planned for This Coming Monday, if all goes well.  We plan to drive home and then come back on wednesday night for thursday am blood test.  We will then know if we can come back home or stay a little longer.  We are waiting on my blood counts to fully recover then a week later (see why there is so much confusion) I must have a bone marrow biopsy to confirm that I am in fact truly in remission.  At this point all signs point in that direction.  This is  a very long process and will require many trips to Gainesville and many Bone Marrow Biopsies, as well as lots of labs.  I will be required to wear a mask in all public places and anytime I am outside.  My inside pets are considered okay as long as they are clean, not up in my face, and I do not scoop any poop.  It will be nice to come home even for a day, but trying to live without proper immunity is a scary prospect.  I know we can do it, but I have finally gotten comfortable with the “bubble world”.

Hi everyone, I am still hanging in there.  I keep hoping I’m going to have my last bad day.  My skin kept  feels very chilled and hot at the same time.  I can’t tell if I am cold and need more blankets or hot and need to take off some layers.  I bundle up like an Eskimo. 

I am no longer in pain so have not needed any pain medicine.  I have had 5 bm’s today.  None that would be called Diarrhea.  Sorry for any of you with weak stomachs, but this seems to go with the territory.  Nothing goes out of your body here with out inspection so at one point they were so short staffed that I was having to stack “hats of poo” so they could weigh them or what ever they do.  How humiliating.  And I am still peeing quite a bit from yesterday, I had a dose of lasix.  I have been so swollen and large in my stomach and legs, but most of that is gone now.  My weight is back to normal or lower but I was actually way over my normal weight by maybe even 10 lbs.  luckily I’m wearing stretch pajamas.   This has been somewhat miserable.  I am still grateful though, I am doing so much better than some others around here.  I don’t know if it is an easier time of things or better prognosis…. just better.  I feel so bad for some of them…

hi everyone,  the biopsy went wonderful.  I was so scared I couldn’t quit talking.  It was done by a PA named Aaron, and I have really come to trust her.  I can’t believe it.  I had zero pain.  This is not normal which makes it a miracle!!  I love God.  results in about 2-3 days.   saw the sunrise yesterday.  I ‘ve seen better but it was pretty good to see.  love everyone, Karen

Hi everyone.  I am doing so much better.  They put me on a pain pump yesterday that also has a continuous drip of pain medicine.  It is perfect.  The pain is still in my stomach and esophagus,  but with this pain medication going, I hardly even hurt at all.    I’m not really able to eat because I feel so bloated and I am having a lot of fluid in my legs and abdomen. My allergic rash is almost gone.  I still have the petechiae rash from low platelets.   The doctor says this is normal after chemo until your counts get better.  I think my blood counts are probably fixing to start coming back up.

Don and I have been walking around exploring the new floor.  He holds my hand real tight and pushes my IV pole.  I have to wear a mask if I leave my room.  I get a little short of breath but the views are amazing.

I will be getting my bone marrow biopsy tomorrow.  Mixed emotions about this one.  The last time it hurt so bad.  I will be heavily medicated this time!!  I won’t have results for a couple of days, but then we will know what the next step is…  Pray that the bone marrow is clean and cancer free!!!! Also that it doesn’t hurt!!!!

love karen

Hi everyone, 

As far as the move went, of all the days to get sicker…ughhh! I started to get chills, spiked and mild temp, and my stomach bloated up like a toad frog.  I was hurting so bad (It all started getting worse in the night).  It feels like I have concrete from the tip of my esophagus all the way down my stomach.  So anyway, I moved via wheelchair, with chills, under a pile of blankets, praying my pain medicine would hold up long enough to get to the new room.  They put me on dilaudid every two hours for the pain.

Probably one of the worst days so far.   They did an abdominal CT (neg), started me back on flagyl and some new antibiotics.  I’m not sure why this pain is so persistent, but it probably just goes with the territory, you know, chemo and all.

So, back to the room… This room is amazing!  It has a glass window that goes down one complete side like a hotel.  I can actually see trees, and people, and buildings, and I even got to see the full moon!  It has a futon couch, sconces for lighting… I just love it.  This room will help to keep my spirits up.

love all, karen

So you all seem to like me bald ?  Thanks for all the compliments.  Believe me, I wouldn’t let Don take  any photos until I piled on some makeup!  I will say, it’s not as bad as I thought it would be,  but it was hard posting photos.  I love you all, and I appreciate all the support.  love, Karen

I feel better.  Today was tough.  I woke up feeling like a prickly pear.  My rash had gotten so bad.  It was everywhere.  Luckily, physician’s assistants round by nine am, and then meet with the doctor.  Anyway, they changed my medications around, took me off what they think the culprit was and added a one time dose of steroids.  I feel so much better.  I still itch but not quite as much.  It seems to be going away.  Hope so.  They will be keeping a close eye on things.  they are so good here.

Also, I got my head shaved tonight.  I told Mom and Dad I was going to do it.  Mom saw me pull out a ton of hair in one sitting.  hair was everywhere.  the floor, my pillow, all over my bed, and clothing.  I just couldn’t take it anymore.  Daddy couldn’t watch.  The night nurse had a set of clippers handy so we did.  It is so liberating.  I feel so much better, but I need a hat because my head gets cold.  I took my shower, and I feel great.  I can’t wait for Mom and Dad to see it.  It really doesn’t look that bad.  I think I look like a small chinese boy off a karate movie, and Don thinks it’s something more like star trek girl. Eeither way, it’s just in time for halloween so it’s going to be fun. 

My rash and low platelet count, plus tons of scratching have left me looking like a speckled trout  or a lady in a symbiotic relationship from “Star trek”.  (that’s for you trekkies)

Have a great nite, and God Bless everyone!  Thanks for all the Cards, comments, love and prayers. Llove karen

Hi everyone,

I am feeling pretty good today.  Just a little sleepy.  Had some Chick fil A waffle fries with Polynesian sauce and it actually tasted Good! yum.  I may eat that again sometime. 

Yesterday, Melissa and Marco,  Crystal, and Dennis and Robin, along with my family, all came to visit, so it was a really nice day.  Thanks everyone.  The visit really perked me up.  These are some of my “horsey friends” so we got to talk about my favorite subject. 

Melissa gave me a wonderful shorter haircut so it should help as my hair continues to thin.  I will say it is still thick enough that you can’t tell yet.  Don took photos.  Maybe I will get to enjoy it another week or two.  I keep hoping I wont loose it, but it is definitely falling out.

Thanks to my friends at work.   They are really good about keeping me comfortable, but I don’t like to take anymore medicine into my system than I have to have.  My kidneys and liver are doing great and all other labs are hanging in there too.  They have given me platelets and some electrolytes, oh, and of course IV antibiotics, but that’s about it.   Oh wait, and then there’s the valtrex, diflucan, and preveced, and multi vite.  Oh, and the birth control.  No bleeding allowed in this joint.   Then there is the benadryl.  I seem to be allergic to something, so I have a rash around my neck.  I have a central line so they are making sure I’m not scratching.   It feels so good to scratch.  oh well, I guess I’m on alot of preventive stuff. They tell me I’m doing really good.  I seem to keep a headache, and the flu-like symptoms can make me cry, but sometimes I just feel okay.  That makes a good day! 

 God bless everyone.  I love you and thank you for all the calls, cards, and comments.

love karen

hey everyone,

I am really feeling bad.  Don suggested updating the journal to take my mind off things, so here I am.  Hope ya’ll like whining.  I am having pain in the bladderish, pee pee area!  This started mildly about a day ago.  They have done all the usual tests and I have increased my water/cranberry juice intake,etc.  Nobody on my case seems to know what could possibly be causing it. but ….Ouch!! It started getting really bad at shift change tonight, and the pain medicine I have been given so far is not helping enough.  ouch!!! and yes they have done all the normal checks and I have no infection.  These nurses are great though.  They have done a bladder scan (11cc only, to my nursey friends) and they are calling the Doc.  I have been promised good medicine and a comfortable night so….

Today I was very weak and tired and did alot of sleeping.  I did finally manage to get my walking laps in with Dad before they left for the evening.  My appetite has been very good but that seems different today too.  I am so bloated I don’t feel like eating.  Not too much nausea though.  O’well, I hope for good news soon,love karen

Heather and Ma (Gale) also got to come.  They showed up a little later in the day, so our visit was stagered a little.  This gave me an opportunity to catch up with Ma and her family, and spend a little time with Miss Heather.  I am going to try to get a little more one on one with my baby girl today, before she leaves to head back to T-town for School.  One thing for sure, she is very beautiful.  Dad and I were commenting on just how very pretty she is in a hospital mask with those big green eyes that smile all the time.  Princess comes to mind…

They have a little patient consult/visiting room here and it was just the right size for all of us, Mom, Dad, and Don included, to pile in and visit as a group.  I enjoyed this very much ,even though most of us were in masks, LOL!  I sat next to Daddy and we held hands while we visited.  His hands are so big a strong, I love to hold them…

Around 7 pm we wrapped up the day.  I was so exhausted and needed a rest.  It ended up working out well though, because I got sick to my stomach (thank goodness everyone had left first),  and had a nice little “chemo clean out session”.  This ended with a nice hot shower and change of clothes.  O well, what does the bible say about vanity?  chemo is humbling… love to all, Karen