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.

Don: We are still trying to catch up on what has happened so far. Eventually we will be in ‘real-time’ mode. For now we are telling you things that happened in the last few days. I did write an email to family, in the wee hours of Thursday morning, telling them about our day Wednesday. Here is what it said…

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Good morning everyone!
 
It took 3 days to complete tests at Shands and finally get Karen admitted on that third day. There have been quite a few tests and the days have been very long for Karen, her parents (Ken and Madeline) and me. It seems like most of what we have done is “hurry up and wait” but we are finally here.
 
I may get some of the terms incorrect but basically they have installed a central line that has three lines so that she can be given more than one medication at a time. It is like a fancier IV that you would see in someone’s arm and is placed in the chest area just under the right shoulder. They are using it to give her fluids tonight but some time on Thursday we will get started on chemo. For those that have been here before it is the “standard” 7-3 treatment. This will take one month. Then we basically have 4 other one month treatments over a one year time span that start one week after the first treatment. They refer to this as consolidation.
 
I have never personally seen any of this stuff before so it is all new to me. I have now seen plenty and hate that we are here but am very happy that Karen is getting this quality of care! The Doctors and Nurses that we have been in contact with so far really now their stuff! I can already tell insurance may be a nightmare, won’t cover everything that it takes but is still a huge blessing as we would not be here without it.
 
There have been many blessings (call them ‘good luck’ if you want) that have been happening. Walls that have been in our way have just fallen down as we move forward. For now that is all we can do, move forward. Today I got my biggest surprise. A great friend of mine, Hieu Le, came to Shands one year ago and was here for 3 months. When he left here it was to be with God. This hit his wife, daughter and son very hard. I will never forget seeing his wife the very next day and hearing the news… As I was moving Karen into her room I saw Kim and Anthony Le (Hieu’s wife and son) at the nurses’ station! It was great to visit with them. One of my tasks today was to try to call them in Panama City but here they were, standing right in front of me. It turns out that Anthony lives one block away from Shands now and just started attending UF in the Dental program. His Mom was just down visiting him and they came by Shands to just say Hello to some of the nursing staff they have come to call friends. Anthony has opened his home to me while Karen has all of her upcoming visits to Shands. God is everywhere.
 
Guess that wraps up what has happened so far. Prayers are appreciated!
 
Don and Karen

Don: I don’t know that I have what it takes to be a nurse. They have to understand the body, drugs and how one effects the other. That is just not something I really would want to do. I have to say though, I do like being over on the sidelines watching procedures get done!

Karen has already talked about the bone marrow harvest and how painful that was. Well, I got to stay in the room to watch even though they had told me I would need to leave once they were ready to get started. They said that they were worried that I might pass out. It is a pretty aggresive procedure. I have come to realize that while I don’t like seeing a big needle coming my way, it doesn’t bother me to watch it used on another target!

I also like the part where I get to be the soothing voice trying to help someone else face the scarey thing in front of them. So if being a nurse could mean only the one part of comforting a patient, I would be all for it. There is so much more though. Hat’s off to those that have chosen that for a profession.

Don: I can not believe what I see around here at Shands at University of Florida. These people are extremely good at what they do. I have to tip my hat to everyone I have met so far. Maybe it is the fact that we are dealing with our own very bad illness but I am here to tell you that we have met more than our share of Angels since we have been here. I really wouldn’t want to be any where else. The quality of care can’t be beat but it is the caring that really shines so brightly.

I don’t want to take anything away from the Doctors, nurses and others (all the way to food service and maintance employees) at any other hospital, including BMC. It takes special people to work with the stresses that come with your customers being sick and still be able to maintain positive attitudes and a good enviroment for the patients. BMC is one of the Top 50. That’s what it says on the t-shirt!!

Don: Karen has done a great job getting started on this blog. I don’t want to just repeat a bunch of what she has already told you. Let me just say that I agree with all that she has written so far. I may have a couple of things to say about how things looked from my side that will add a little more depth to what is going on down here. ( I will try not to let this message get away from me!)

One thing that really strikes me is how many people have reached out to her. People from work, family, horse friends and more. I really want to thank them all for the friendship, love and support they have shown. If prayers alone were the answer then we would already be home and this is just day two of the chemotherapy.

Second, everyone knows that Karen is a nurse and I think she is a very good one. Now that she has spent 8 days in Bay Medical, had surgery, run around Shands for 3 days before finally getting a room and started her treatment; she is going to be ready to take her nursing to the next level. She has such a better understanding, now, of what the patient could be going through. She told me that it has made a tremendous impact on her.

Don: My good friend Mike put this site up for Karen, installed the Word Press software and thought up the domain name. This was extremely helpful as I sort of have my hands full at the moment. I knew I wanted to get a blog started for Karen but there was just no time.

Mike, we both thank you very much for your help!

Don and Karen

Don: For some reason, whether I am about to start talking in MLS Committee meetings or a Board of Director meeting or if someone in the Bay County Association of REALTORS® sees an email from me, I would swear I hear an audible “sigh”. Luckily I am not sensative. 😎

It seems to be a reaction to the fact that I seldom keep things “short and sweet” in an effort to make sure that I am understood and to also give all the needed facts. Of course, how many facts are needed is an opinion. My opinion is, if I can think of another one, I should give it. Those around me seem to feel that I might could at least try to shorten things a little.

Karen has asked me to post a little bit about what is going on here from my viewpoint. She may start sighing herself, once I get started. Between Karen and me, you will have a very good picture of what has happened already and what we face in the future. At any time, if you want to just see what Karen has to say without having to also sift through Notes From Don you can just look on the menu on the side of the site and choose the Category of Notes From Karen.

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.