Freedom - Do you know how hard it is to get checked out of a hospital some times

Today was my day 13 for my third transplant and yesterday Dr. Gouw (corrected spelling) had indicated that baring any problems from me that I should be cleared to get out of the hospital today.  I just spent some time looking at my June-July blogs from 2011 and see that it was also my day 13 when they booted me out of the hospital last time.  The old blogs talk about some AC problems and I alluded to it might have had some thing to do with it, but never the less, I got out today, I'll get back to today in a few lines. The last endtry was on Oct. 27, my day 10, that was not a pleasant day, but I guess all the pain from the stem cells engrafting that day and the following day or two lead to the possibility of me getting out today, so I need to bite the bullet so to speak and be grateful that they engrafted with a purpose because over the next couple of days, Dr. Gouw was very amazed at how quickly all my numbers went up rapidly, I think the last actual numbers that he shared with me yesterday gave me more white blood cells than I have had in over 4 years, I'm pretty sure that number will go down after I go through the day 100 tests and Dr. Te and Dr. Petersen make the determinations as to my maintenance program, but until then, I am going to enjoy actually having some kind of immune system to fight off problems - even though it is kind of a virgin one that doesn't have any built in fight against most if not all childhood sicknesses, that will also have to wait until after Day 100.

So I must have been like a kid waiting for Christmas morning last night, because I didn't sleep hardly at all, I finally got a little sleep after I quit fighting it and watched about half of the 2nd Hunger Games movie at about 3:00 this morning, which reminds me, I need to finish that move, maybe after posting this blog.  When I woke up this morning, I started cleaning up my stuff and packing my bags with everything in anticipation of getting set free.  It was after 4:00 pm before I left the hospital because of several things, but mostly because of the fact that I was alone, I probably could have sped that up by 2-3 hours if I had taken Cara's offer to have Tyler come up to the hospital and make believe he was going to stay with me until Matt came tomorrow, but I didn't so that is a good reason why it took so long - by the way, I think I have failed to thank Bruce and Cara for them coming up last weekend and visiting and helping me, it was very nice and I really do appreciate it.

So, I'll write in a couple of days after my out patient trips to the clinic give me some kind of idea as to when they'll take the line out and send me south.  Thank you all for your thoughts and prayers I really appreciate them.  Until next time,

Day 10 in E-802 - I think I got some good news.

Let's start with Day 9 - it wasn't all that fun.  My blood numbers were in the toilet and so they scheduled for me to have two(2) blood transfusions and one (1) plateletes transfusion during the day, so I pretty much locked onto my IV rack for all the day.  And to top it off, during the afternoon, my little stem cells have decided to start the engraftment process (go where they are suppose to be and start working) - which is great, but there is some pain involved them doing that great thing.  So with some good medications and help from the BMT staff I am making it through this process.  The pain is generally better today, but I still get little pockets of pain in my bones.  Just nothing like I had to deal with last night, we'll see how that progresses.

Day 10 - I had a visit from Dr. Gaow this morning (I'll check spelling) to talk about my numbers.  All of the nutriphils are moving up,  All of the other blood numbers are much better and so we had a little talk about when I might get out of the hospital and be able tomove to the motel for the next 2-3 weeks.  It looks like it will probably be Friday, but there is also a slight chance they'll kick me loose on thursday, which means I'll try to get in touch with Daniel or someone to help me.  We've got a couple of days to worry about that and so I won't make any decisions about it right now.

We'll see how things work and hope and pray for the best solution to present itself.  Thank you all for all your thoughts and prayers, They are working.  Until next time.

Day +6 in gold old room E802 LDS IHC Hospital

Day 6 was a lot like Day 5 - except Day 6 - - well it was a lot like Day 5, I'm sure there were some differences, Let me think.  I talked to Patty a couple of times, I did that on Day 5, I took a shower on Day 5 and didn't take a full one on Day 6.  My nutriphils (spelling?) were still about Zero and now they need to start raising.  Everything seems to be doing what they expect they should do for the recovery stage.  One thing that was different between the two days, the Dietitions were plotting on how to get more food in me, you see with my nausea, I do eat, but I have to schedule it when I'm getting nausea medicine in me so I greatly reduce the opportunity for the nausea to win and for me to "lose my lunch" or dinner, or breakfast whatever the case may be.  I thought I had it going pretty well but yesterday (Day 5) I got off schedule and by the time I realized it, I really only had time for two meals, and that was from an able to eat them point of view not a nausea point of veiw.  When you sit in a room all day - except for taking a trip or two around the ward, you really don't expend much energy, so my typical day consists of about the following:

Overnight the nurses and aids come in two - 3 times from around midnight until 6:30.  So inbetween that, I try to sleep and usually wake up about 7:30-8:00, it's hard to get use to Utah time when it's still dark almost at 7:30.  Then around 8:00 the nurse comes in and we talk and they get the vitals and some nausea medicine so I have about 1-1/2 window to get breakfast going, I usually get two bowls of repared cearel, milk, banana, orange slices or similar to try to make about 500-600 cal.  Then I talke my morning nap, or go for a walk, around 1:00 nurse and aid come back in and we do it again and again I have 1-1/2 hours to eat, and sometimes I'm still full from breakfast.  Then in the afternoon is when hygiene items take over and I try to walk again.  Then about 5:30 the whole eating thing starts again, because if I don't call them by 6:30, the food people call me and ask if I am going to order anything that night.  The main kitchen closes at 8:00, so I try to make my order and wait for it and for some more nausea meds to get me through.  I try to eat a little more at lunch and/or dinner to make sure I get over the 1500 cal threshold that I was told about.

Well now they have a new longer lasting nausea medicine they want to try, Emend ( Fosaprep ) I got the name of it from a good nurse, to see if it can be bridge between everything rather than some of the peaks and valleys I get now, althought I really don't feel like I'm having too many valleys (knock on wood).   I had a bad day when the schedule didn't work very well (or I didn't work the schedule very well) so they are getting very proactive on helping me to help myself.  We'll have to see how it will work for me to meet the goals to get me out of here and on my way to the half way house before being release to go back south.

Cara and Bruce are scheduled to come see me this weekend.  I'm looking forward to that and I think I have a couple of small errands and things they can help me with.  Then next weekend Matt is suppose to come  up to hopefully help be transisition to the half way house.  I send blessings to all of you, we are all so grateful for all the thoughts and prayers from all of you on our little issues.  Things will work out eventually, but unfortunately for us, we work on God's time, no the otherway around.  Until next time.

Day +2 Melphalan is in and so are my 3.83 miliion stem cells that have been waiting

Day -1 was fairly unevenful, they came in during the afternoon and got me ready for the Melphalan that was suppose to happen at about 4;00 pm.  The time was pretty close.  One thng that had been happening was they were continually giving me fluid throgh my lines since just a bout the minute they got me to my room E-802 if I hadn't said it enought, so they wanted to make sure that everything was running well, but for me it was a real pain since I am running fat, about 260+/- sometimes less, once in a while a little more, they had so much liquid in me that at one time I was up about 285 and I was pretty miserable.  A little more on that later.  Up to this point nausea hadn't really been an issue yet, I was eating pretty good although I had to be a little careful about wha kind of dishes I let stay around me after food services brought them up.  But I think I got it figured out.

Day 0 - transplant day, started out pretty well, The McMillans wanted to come up to see me, but I had to tell them not to because of the time line and logisticts to work around the nurses and Red Cross worker that took care of the transplant.  They started bringing stuff into the room around 10:00 am and then started the transplant process around 11:00 am.  I had 8 evelopes left from my first collection, here's hoping for some real good ones in there.  They come in a frozen nitrogen cooler and the Red Cross worker is skilled in retreaving them and warming them up to put into my IV.  It probably too 1.75 to 2 hours for the process to be completed.  They checked me out and then told me to rest for the day.  I had the bowl of lemons that I had used before on the transplants, but for some reason, I didn't have to use this one very much and it didn't bother me.  So anyway, most of Friday, my new Day 0 was kind on fuzzy because I was sleeping and dozing for a bood portion of it.  At this point the Nausea is still doing pretty well.

Day 1 - Saturday - transplant day +1.  I slept pretty good overnight, but about 4:00 am-/- I woke up for restroom purposes and made the mistake of taking a drink of water.  There wasn't anything to come up, but it did try, so I think this was my first offiicial bought of nausea for this go around - dry heaves of course.  The nurses are great, they came and gave me some ativan and that settled me down and got me back to sleep.  I got up later, feeling pretty good and even ordered some breakfast, things that were light, not cooked and definitely none of the evil black warming trains whose smell is enough to set me off from 10 feet away.  So I had breakfast, things were feeling pretty good and and then the nurses gave me the cup with all my morning pills in them.  Of course I picked one of the larger pills like I ususally would but while I was trying to put it down, it scraped my throat and the launch sequence really begain.  It didn't last long, but unfortunately I didn't get much good out of the breakfast I had just ate.  Anyway, the nurses and I came up with a little more agressive way to get me my nausea medicine and except for another small case of dry heaves this morning, I'm doing pretty well.  I got up and walked around a couple of times.

Day 2 - Sunday - Transplant day +2.  It's been a pretty good day, took a shower, walked around watch a lot of football and did a fair amount of sleeping and dozing for the day.  The stomach is still not calm by any means, but the medicines that they are giving me seem to be doing a good job.  I think as I understand it, the next few days are maybe not going to be too fun.  The new stem cells have to find their way to where they are suppose to be, and the rest of my system is in stress wondering what is going on.  I hope by the end of the week things start to even out and everything does what It's suppose to do for my recovery.  It was good to talk with mom, Matt, Manda, Holden and Josh today, in addition to Patty's brother Bill who is suppose to go see her tomorrow morning for a while.  Well bless you all and especially those that are taking care of Patty during this time.  Until next time I hope you are all well and safe.

Travel up to SLC, Check In, Admitted and Melphalan (Chemo) Day -2

Amanda and I left home in good time Sunday morning, many thanks to everyone that has stepped up to keep an eye or two on Patty during my time up here.  And thanks to Ryan for letting Amanda come up here with me to help me get settled in.  We had a good drive up, stopped in Parowan to see Mom and Dad, we went to Bruce and Cara's house to see them and also got to see Krystal with everyone too.  Then we had to go to the Parowan Dairy Freeze to get Corn Dogs for Amanda and I have to admit they make them pretty good and then we were on the road for SLC.

Got up Monday morning and came up to LDS Hospital to have all my pre-admittance work done and then got some lunch and rested until we went to dinner, I picked the Texas de Brazil restaurant that is in City Creek, it was very good and I ate too much, but it was very good.  I do have to say that the one in Vegas has a much larger and I think better salad bar than this one does.  Oh and I forgot when we went back to the room after lunch, I had to get Amanda her own room because my terrible snoring drove her to spend most of the night in the bathroom tub because even with earphones, she couldn't stay out in the room with me.  Brings back memories of the many scout camps I went on with the boys back in the day.  I still don't know how Patty stays in the same room with me.

At the Monday pre-admittance meetings they gave me the great news that I needed to be at the hospital to get my line put in so Amanda and I got up fairly early and made it up here on time, of course hospitals are like the government, a lot of hurry up and wait scenarios.  I was in pre-op/recovery for a while before they were ready for me in the operating room.  I do have to say that once they got me in there, it was a great experience because they got me ready and knocked me out and then woke me up before I knew I'd been knocked out.  After that, they brought me up to 8-East, that is the floor that the Bone Marrow Transplant Unit (BMT) has in the IHC LDS Hospital.  They didn't mess around at 4:00pm yesterday I had my first dose of Melphalan, the heavy duty Chemo they use to kill any cancer cells that still may be in your body, I had 1% in my last bone marrow biopsy that comes out of my hip.  They give two doses of it, the second dose was given to me this afternoon (Wednesday Oct. 15) on my day -2, they count forward and backward from the date of your transplant, My transplant is scheduled for Friday.  So tomorrow on Thursday, I don't have any procedures scheduled so the Melphalan will be out of the system before my stem cells get put back in, my 3.83 million cells need all the help they can get to the right places and "engraft" in me - it means they start working and growing and I start making new stem cells and my other cells can grow and do what they are suppose to do.  I am quite happy, It is Wednesday, October 15th at approx 9:00 pm Utah time and so far my nausea had not been an issue, I know it will be, but an grateful for the delay in it's arrival.

The staff her is all very good, I remember many of them from being here 3-1/2 years ago and many of them say they remember me too, they have all done good by me.  Oh and another special thanks to Daniel that came up yesterday afternoon the visit and take Amanda to the airport so she could go home last night, and then he came back up and we visited for over an hour, sorry Kim for him getting home late but everyone knows how I ramble on and on and on...  I will try to write again after the transplant occurs.  until next time.

Getting ready to head North -

It's been a while since I posted, I don't really have anything new to say, but figured I would ramble a little before Amanda and I get in the truck Sunday morning and start up I-15 to Salt Lake for my stem cell transplant. I first want to thank everyone that helps us all the time and especially everyone that helps Patty. We have plenty of challenges in our lives, but we also have a lot of blessings that we have been given over the years. Everyone has challenges in their lives, some are harder than others and none of us know why. I am posting a couple of pictures with is blog, the first one is me a couple of days ago, I figured that I would let my hair grow before the heavy Chemo stopped or really slowed any hair growth on me, I hate posting any pictures of me, I do not like what I look like in a photo, but I want to remember the "before" and the next picture, "getting ready for Chemo". I decided that after last time I would go ahead and cut most eveything off before the Chemo helps remove any of it, that way it will come off in small groups instead of long clumps that would have come off if I hadn't got a hair cut. Last time I had started losing my hair before I went to a shop and got what was left all taken off. I probably should have gone shorter this time, but it will be OK.
While I am in Salt Lake the kids are really stepping up to handle things around here, We have several care givers, ward members, friends and of course the kids all taking shifts to keep an eye on Patty and help out around here. I am feeling very guilty that I won't be around and it will be so strange to not be the primary care giver for Patty for the next 2 months. We have been together for over 36 years and we have never been apart from each other this long. Again I am grateful for everyone that will make it good for Patty while I am gone. If things go like they did last time, Monday morning I will meet with the doctors, give some blood and do all the pre-checks, then on Tuesday they will place the tube in my chest that will be the supply for all the medicine during the next 5-8 weeks. I will be admitted and then probably on Wednesday I'll get the first shot of the heavy Chemo in the form of Melphalan (spelling?). It was what they used last time and I think it's their heavey Chemo of choice for this type of procedure. If they give me the second one on Thursday, they will wait a few days and then put the stem cells back into me on Sunday or Monday and then the waiting game to make sure they grow and do what they are suppose to do. I hope everyone is enjoying the transition from summer to fall and that everyone is happy, well and safe. Until next time.