From Ginny’s perspective:  Karen had a GREAT day.  She was up and having a good time quilting, painting, and even went to a sing-a-long this afternoon.  No problems at all…then around 7:30 p.m. started feeling bad.  Went to shivering and complained of spiking a temp…although the thermometer at that time didn’t agree.  By 9:00 p.m. temperature was 101.5 and she was started on Flagyl.  Blood has been taken via the central line and also from her hand (peripheral)…the results will be cultured and compared.  Had to be taken from both sites to rule out infection isolated in the central line vs. systemic (throughout her body).  Urine cultures also taken to rule out infection there as well.  Her white blood cells are no longer abundant (by tonight all white blood cells will be zero) and unable to fight infection which leaves her body completely vulnerable to any invader.  I must leave tomorrow afternoon…and it pains me to leave her not feeling well…

To all of you who want to visit her…she would love the visits however, if there is any chance that you are sick or you have been exposed to anyone who has been sick…Karen is not able to fight off any “bugs” at this time and it could put her in seriously grave danger.  Please, everyone, consider her first and call or write instead.  She does feel the love and would love to see everyone, but her safety must come first and we all want for her to be able to GO HOME!  Thanks again, Her big sister Gin 

10:00 p.m. Fever appears to be breaking…one anti nausea med (phenergan) is wearing off and another one (zofran) is taking hold…The amount of pills and meds that are being pumped in and swallowed is unbelievable!  I don’t think I have ever seen anything quite like this….but she appears to be feeling better even if she is still loopy and mixing up her words.

wow, I don’t know how it is for everyone else, but It seems like time is flying for me.  This is a good thing.  I had a rough nite but am feeling better now.  I have completed by 7 and 3 chemo dosing and am now just waiting on my blood counts to drop out.  I’ve only actually thrown up once and I am considered nuetropenic at this time.  I get really gittery on my insides mostly at night but it seems that ativan and an occassional pain pill helps.  I am trying to only take what I need because they already have to give me so much as it is.  I didn’t know ativan melted under the tongue can have an immediatley reaction to stop nausea.  praise God.  I am really excited today because 3/4 kids are coming.  2 boys tonight and Heather tomorrow. Randy is away at Harding University and will have the hardest time visiting.  But God is doing something so special with him that I know he will be strong.  I can sometimes feel him holding me up in front of my savior and praying over me.  Thankyou Randy, my firstborn Son.  I know what you are doing I my behalf, I can feel it:)

And Don,  I can’t wait to see you.  I know I don’t call alot but that’s because I miss you so much.  I don’t like to think of you not here with me so I just try not to think about it.

Jake and Dylan, and Heather, I can’t wait to see you.  I hope you are not too bored.  this room is small and not too exciting but just the fact that we are together will be enough.  and there will be others here to entertain you some.

Ginny washed all my clothes today so I have plenty of clean clothes.

gotta go, nurse needs something

karen

From Ginny’s perspective:  (Karen hasn’t felt well enough to blog in a few days but wanted me to update everyone.)  She is still walking (taking her laps around the “Y”).  She is absolutely exhausted and is very nauseated.  The nausea has increased greatly today.  She awoke to vomiting (the first time since chemo began) and has had to have Ativan and other meds round the clock to combat the nausea.  She doesn’t have a long attention span and can’t converse for very long at a time before she is utterly exhausted and must sleep for a while.  We have to encourage her to get up and sit or walk but she is doing it especially when the meds for nausea take effect.  They tell us that movement is important to ward off pneumonia that would complicate the chemo treatments.  It is a dance of sorts between the symptoms and fatigue.  I thought at one point she would throw me out of the room for questioning her if she wanted some crackers…she snapped and asked if “we had to talk about that right now!”  I understood the irritability to mean that she is very sick for that moment, because later she needed me to be the big sister and crawled up on our recliner with me and cuddled…just like when we were little girls.  When she was little she used to come and get in my narrow twin bed with me when she was scared or needed to cuddle in order to go to sleep.  At times as a young girl I would get aggravated with her and saw her as “dependent” and “needy” even though that was probably not the words I would have used back then.  Maybe “a pain” would have been more like it!  She is and has always been so small and when I hold her she is like a little sparrow.  She spent a while today cuddled as we talked about how she felt and how she wanted this to be over and resume her life again.  After a while, she was too tired and needed to get back in the bed for another nap.  It is funny that as an adult, I would hold her FOREVER!  Isn’t it interesting how God shows us mercy and  enables us as adults to show mercy, love, tenderness, and patience to our loved ones if we let Him.  I sure didn’t show these qualities to her when I was young.  I was telling dad today about us sharing a room when we were pre-teens and how I would tape off her side of  the room and DARE her to cross the line…I am not even sure if “my little shadow” had an exit (with all the tape) to the doorway.  I am sure that her “issues” of exit were probably not of my concern…(Ha) and yet I would have fought to the death for her if anyone else treated her as I did.  I wish that I could take this from her…but I don’t know if I would have her strength.  She truly is a fighter and I am so proud of her and her strength. 

She did have a few bright moments today…we applied a little makeup…she was so beautiful!  I spent some time massaging her back, brushing her hair, and holding her hand.  I love her so much!

Back to the chemo:  This evening the last bag (#7=7 days) was hung for the second round of chemo…Tomorrow is day one of the third chemo.  Her mouth is sore but she is still eating pretty well…some meals better than others.  She still has her hair but it appears to be changing.  A little wispier and I am finding a few peices here and there.  It looks a little thinner in places but we can brush it.  The chemo has made her “neutropenic” now so she is considered “immuno compromised” and extra diligent care has to be taken not to expose her to any germs.  She has to wear a mask out of the room.  Strict handwashing is observed.  She can not eat yoghurt (due to the cultures), no fresh fruit or veggies, no fountain drinks, no softserve icecream.  Basically, she can’t have anything that hasn’t been pastuerized or sterilized in some way. 

She misses her family…she talks about the kids coming to see her.  She is worried that she won’t have the energy to converse and spend time with them.  I told her it will be ok.  They will be patient and wait for the moments that she will be able to.  I hope that I am right!

Thanks everyone for the encouragment and prayers!  She is fighting the fight with strength and courage and grace that only God can give to someone in her shoes.  Again, thanks and love to you all.  May God bless you and keep you.  Gin

Hi everyone,  computer  is working for now.  I love a miss everyone.  thankyou for all the calls and comments and prayers.  I am really tired but so far so good.  My stomach gets to hurting some but they are really good here about bringing in medications to help.   Thanks for the pony Lisa M.  It is adorable!  I will be sleeping with it.  I look forward to when I can come home and things will be back to normal.  love you all Karen

Hi Everyone,  I am really tired.  They say it will probably get worse.  I have occasional nausea and some pain where they put in the central line but for the most part I am doing  well.  I think I am so scared of what is to come that I have some trouble staying super positive.  I feel like I am in a tunnel…I am so thankful for Don, and mom and dad and all of you.  We cannot pray enough!!  I walk twice a day and move around the room the best I can.  I am hooked to this giant Iv pole which makes everything more difficult.  I am so Happy, Laura is coming in today and Ginny is coming for a week on tuesday.  Don is hoping to go home for a little while to work at his job so he can save some time off.  I will miss him… But the girls will keep me entertained and nobody is leaving me alone while I am here.   continue to pray.  I will be home soon.  I miss my boys and girl.  please keep in touch.  and yes I still have my hair.  I will probably loose it around day ten…. I don’t really care anymore, I just want to live… love everyone , time to go shower.  ps. Ginny and Laura will probably be screened for potential bone marrow donors while they are here, keep your fingers crossed 🙂

They take alot of blood tests, monitoring absolutly everything.  The are making sure to be proactive if there is anything extra I need given either IV or by mouth.  I am seen daily by a Doctor, Physicians assistant (PA), a fellow or intern (almost a doctor), and then the night nurse, not to mention all the techs, etc.  Everyone seems to need to listen and poke.  This is different than back home.  The Doctors here are very involved in the clinical aspects.

At around 330 pm they brought in the first 2 bags of chemo.  one was red and goes in for only 30 minutes.  The other is slightly yellow and runs contiuously for 7 days.  I felt like it went straight to the cancer spots.  I got very warm in the places that I had been hurting earlier; my hips, belly, back, and top of my knees at my femur.  now I just feel like I’m weighted and heavy with a mild headache like I have the flu.  my tummy gets pretty crampy, but so far no vomiting.  I have been prayen hard on that one.  I hate to through up.  They are giving me some antinausea coctail that includes zofran and decadron.  this seems to really help.  I am needing ativan at times for breakthrough nausea and restless feelings and I can also have phenergan if needed.  so far so good.

Today I was unable to eat after midnight because I was scheduled for placement of my central line .  This is an Intravenous access (IV),  that  goes in just above your collar bone and comes out somewhere just below the collar bone.  it has 3 places to get blood or recieve medication.  I was nervous of course getting it put in, but they kept me really comfortable with warm blankets and medication.  Anyway, it has been pretty sore, but they are not skimpy around here with pain pills. They took me to my room after this procedure.  The room is pretty basic (almost dreary), and very noisy.  It has a reverse air duct type thing that filters all the air out and helps keep bad germs out of here.  I am expected to wear a face mask every time I leave this room, and cannot leave the floor as long as the chemotherapy medication is running.  They will not actually start my chemo until tomorrow and it will run continuous for 7 days.  I am currenlty being “randomized” for a special study where I may be getting an extra chemotherapy drug starting on day 8, after my initial chemos stop on day 7.  This extra time is nice because I am so scared of the chemo.  I am already feeling pretty weak, and the thought of adding something poisin to the body, ugh, I just don’t know.  But like I read in a Cory Tin Boom book, when does God give you the ticket for the train?  Just before you get on.  This is how it has been for me.  I am somehow given the resolve, and strength prior to what ever I have to go through.  I may be bawling my eyes out the night before, but when the time comes….I’m at peace.  Thank you heavenly father, for your Son, your spirit, your peace, and your salvation.  I pray for strenghth and recovery, in Jesus the Christ, amen.

We got here at around 8or 9am.  Today I was scheduled for a spinal tap.  I was nervous since the bone marrow thing was very painful.  It hurt so bad when they got into the bone (3 times), and the next day or two I felt like I’d been kicked by a horse.  oh my gosh.  that really hurt!  they will have to do more bone marrow biopsies, because it is the ONLY way to tell if I am in remission.  not taking any chances there…  The spinal tap was a piece a cake.  Don who is getting quite medical, got to stay in the room for both procedures.  Anyway, on with the story, we ate breakfast but because they had told us we would need another CT scan I was  not to eat again until after the procedure.  This did not start until 5 pm when I got to drink a quart of contrast with purple gatorade over 1 1/2 hours.  Yuck!!  no CT until 630 pm!!!!!  Don and I were starving!  Not to mention, I’m already dealing with weakness, fatigue, and nausea.  ugghhh.  What a long day.  We ate dinner at a china buffet afterwards, my favorite.  Mom and dad had already eaten so they just watched.

This Doctor is amazing.  He spent so much time with us.  Handing printed out information specifice to my condition, speaking with us for hours about treatment standard and what to except.  He stated with AML if you take all patients across the board from all ages, health, and backgrounds it is possible for a 25 % cure rate without recurrence.  He said you can take the same people and get a 50/50 chance of remission after the first induction (approx. 1 month of chemotherapy).  Without treatment a person in my condition would have approximately 3 months to live.  With treatment if things do not go well then it is possible to only make it about 3 months also.  He also stated that several things that are on my side is the fact that I am considered young with great health prior to this, and no health risk behavoirs such and smoking or drinking, or working around harsh chemicals, etc.  Anyway, we came here to fight cancer and that is what we are going to do.  oh yeah , they also checked me for a genetic marker  called the flit3 gene.  Only 30% of patients with AML have it and it does tend to have a negative effect on the prognosis.  So anyway, I have it, so I am also participating in a blind research study where I may recieve another chemotherapy medication to prevent the negative effects of this flit3 gene.  I could just get the placebo, but were gonna be praying for the real drug especially if it is helpful.  Lots of information.  He was very direct and laid it all out there on the line.  there are times that i just want to get in the car and drive away…and yes shed some tears….I do not feel it  is a lack of faith but more I wish it wasn’t me.  I cant’ imagine who I would give it to.  Not even my worst enemy.  I miss my family and this is going to make me have to be strong.  I am a big baby and have always considered myself a little spoiled.  This will be my test.  It’s weird though, because after every melt down and eventual prayer, I seem to wake in the morning with a new resolve and ready to take on the next day, whatever it brings.  Thanks for all the prayers and support.