Don: I did, in fact, head back to Panama City. I called Karen during the lonely ride home. She was having a great visit with her sister Laura and Crystal, a family friend! Glad she has her sisters there all week. I will be back before you know it. I need to get a few more of her more talkative friends to visit and/or call during her treatment. There is nothing Karen likes more than deep conversation. I am a man of few words. Any one that wants to help out can just call her cell phone. For the PC people that isn’t even long distance!

Don: I am not a big fan of football and an not an alumni of any college so I don’t always get it. You know, the “my school is better than your school and our sport team is gonna kick your sport team’s butt” kind of it.  I did get a small taste of it this weekend though.

It was Homecoming at UF on Saturday. Friday they had the Gator Growl. Saturday they had the game and won by a field goal near the end. I don’t remember the exact score but I was told both teams were in the 20’s. Sounds like it would have been an exciting game, if you like that type of thing.

Today Karen’s parents came in and we all watched Karen eat. She may be starting to lose her appetite a little but she still ate pretty good. She is sleeping a little more during the day but who wouldn’t? Put me in the bed when I don’t feel good and I just want to sleep until it feels better.

After lunch I took about a 3 hour walk all around the UF campus. It is huge! You can’t help be at least a little impressed. You might even go so far as to be a little jealous of all the students who are going to school and preparing for their future. Let’s all hope they take full advantage of their time here for more than social engagement and watching sports. Looking at all the Halls and the map I found at the official gateway to the university, you are led to believe that they have anything you want to earn your degree in! Best of luck to all the students. They may be researching all types of illness and finding cures or better treatments.

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 🙂

Don: For those of you who aren’t here, let me draw a picture in your mind. We are in an area that has hallways that make a ” T “. Karen must stay inside that space. We are on the top part of that T and sort of to the left. When we step out the door we usually go to the left for about 80 feet until we get to a set of double doors. We then turn around and go back the way we came for about 240 feet and we meet another set of doors. Walking half way back (120 feet) we turn to the left (the nurses station is on our left at the corner) we walk to the end of the hall (130 feet), turn around, walk back, turn left for about (40 feet) and then we are home.

If you add all that up we only walk 740 feet on one round trip. We sometimes do a little more instead of stopping at the door. We have read all the posters and plaques and viewed all the pictures and photos. We will be moving to the new Shands Cancer Hospital on November 1, 2009. It is right across the street and they bulit a tunnel under the road to connect that hospital with the existing one. More on all of that later!

Don: Everything is a little foggy for me. Being a Martian (you know, the Venus/Mars comparison), I think I am supposed to be given some facts, make a decision and fix the problem. That is just not the way it works when it comes to Leukemia. There is a set method of treatment. That treatment seems to make you much worse but the hope is that you come out the other side with all the bad stuff (and all the good stuff) gone so that they can start to build you back up with only good stuff. While this is a good plan for the Doctors and the patient, it leaves me feeling more than a little helpless.

My job from here on is to just be here, be supportive, make sure that she knows she is not alone in this fight and love her. The nice thing for me is that she is from Venus. She doesn’t expect me to fix this, she just expects me to do my job. I can do that.

I expect that Karen will be filling in a few more of the details of the last few days, from her view, today. It is Sunday morning and she has been on chemo since Thursday. The 7/3 treatment has completed the “3” part. Now we just keep getting the remaining 4 days of the “7” part. For me, I have brought you up to date on what I can pull from the fog of my mind. Karen has eaten breakfast and is taking a nap. When she wakes up we will take our walk.

Don: This is going to be a long procedure. On one hand things are supposed to move very quickly. On the other it seems that they are going very slow. To me, it seems that Thursday jumped straight to Saturday. There really hasn’t been much difference in the last three days here.

Karen get’s up and takes a walk a couple times a day. Her appetite is still pretty good. We watch a moive at night from a bunch of selections the hospital has on VHS tape or that her parents had on DVD in the camper. That would explain why we may miss a day during this time period, the days are just so similar.

Friday was a little different for me. I got up at 4:45, visited with Karen for about an hour and then hit the Interstate headed back to Panama City. I got home just in time to brush my teeth (even though I hadn’t eaten anything yet), jump back in the car and drive to the dentist. About an hour later they had finished pulling a tooth, gave me a persciption and sent me out the door. I got the pain medicine and headed back to Gainsville. I got back to Shands about 5:00 their time. Of course I never ate that day. All I took for pain was two Tylenol right after the appointment. I at least got lucky that I don’t have a lot of pain from the tooth.

Saturday seemed just the same as the other days to me. I sleep in a chair that makes into a bed. Karen and I wake up, talk, eat breakfast, watch a movie, eat lunch, her parents come in, we visit, I ran to Wal-Mart, when I get back we visit and then they leave around 5:00. Karen eats dinner, we talk, I watch a movie and she goes to sleep. Now it is time for me to do the same thing.

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.