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.

We came to the outpatient acute care clinic at about 0900.  The place was packed.  families and patients and us…all just hurry up and waiting.  We did get to talk to alot of really nice people and they had all been through several treatments similiar to what I would be going through.  We had a prayer meeting with several of them and all were very positive about recovery.  Some looked very weak and sick, and almost all the cancer patients were wearing masks.  I was sceduled for a bone marrow biopsy and probably 20 blood draws.  this of course took all day.

This place is so pretty.  It is heavily wooded with lakes and nature  trails.  It is also kindly accessable to handicap and motorize wheelchairs/scooters.  We have gotten to see alot of deer, and there is promise of bison and gators and wild horses.  Since I will be in the hospital, Mom,Dad, and Don will have to let me know of anything else they see.  Another special treat is that the bath house is right across the street, so hot showers are not a hill and hike away…also we have the lovely Tippy, mamma’s little chiwawa to keep us company.  She is so sweet and she just adores Don (he can’t replace momma but we’ll just say she likes him alot!)  She has been really good even though she’s had to spend some long days crated up waiting on us to return from preliminary tests and such…

Thursday after the appointment was a little crazy.  We kept having to make trips back and forth between Human Resources at BMC and Dr Mahmood’s office hand carrying information.  We wanted to get to Shands as soon as possible.  Mom and Dad were great, and Don too.  Emily at HR was a super help and got all the right people involved.  We are still calling her regulary from Shands if we need her to make something happen.  Anyway,  They got us an appointment first thing Monday morning, Oct 12.  Mom and Dad got busy finding a campsite to stay at, and Don and I had to wrap up a bunch of loose ends with work and getting our animals taken care of.  Shands told us over the phone to be prepared for a long stay and that we would probably start chemo as soon as a bed was available.

Dr Mahmood was very kind and friendly.  I think he took some blood and did a physical exam.  Blood work was good and physical was fine. no problems.  He then said he would like to look at the slides himself as he had already read the pathology report that came back from a lab in Tennessee.  The surgeon Dr Morris wanted to be sure the sample was checked very thorough.  Just in case.  Mom, Dad, and Don came to this appointment with me.  When Dr Mahmood came back he told us the news.  I began to cry a little.  It has felt very overwhelming.  I felt sorry for the doc have to see me tear up like that, but I’m sure he’s seen it before.  He then told us that I have Acute Myloid Leukemia with an extramedulary presentation.  He told us it was a very aggressive cancer and needed to be treated promptly for the best success.  He also felt it was better to go to a larger University hospital in order to be managed by a team of docters for the best outcome and prognosis.  He let us know that even though the treatment plan is pretty tough alot of people who have this disease can go into complete remission with a potential for cure with no recurrence.