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.

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.