Way past time for an update I think it's Day 24+/- ?

So, Day Zero (0) was Oct. 17th, Halloween was day 14, so November 10th should be Day 24. The last time I wrote was about Day 13 to tell about the trials of getting out of the hosspital.  A lot has happened since then, which most people know about, but here is an update.

They did finally let me out and then on Friday Oct. 31, I picked Matt up from the airport so he could watch me for the weekend.  We had a good weekend together, I had to go to the clinic on Saturday to give blood and then I put Matt back on the plane and then went back to the room to get ready for the Monday and Tuesday appointments.

A quick word about the room.  If you have to use an extended stay hotel in the Salt Lake area, I would recommend the Candlewood Suites by the Salt Lake Airport, the rooms were nice, and clean and the staff was very helpful.

Monday's appointment was pretty un-eventful, they said hi, did what they needed and kicked me loose.  I wish I could say the same about Tuesday, from the time they took my tempurature it became a non typical appointment for anyone.  They sent me to get a scan of my neck since they thought I had a blood clot in my neck - they were right about that one.  So that brought on the prescription for the lovenox blood thinner that I now have to give myself by shot twice a day until New Years.  We won't even talk about the issues with COBRA insurance policies before you have an automatic payment set up.  So, the other big item that happened during that Tuesday was the removal of my central line.  I had to go through the whole set up for the removal, but it really took them less that 5 minutes in the operating room and I was back to the prep and recovery room for a few minutes before heading back up to the 8th floor and finally getting released so I could go pick up Russ from the airport as he had scheduled to come up for a couple of days.

As with Matt, I was very grateful for Russ coming up, and as it turns out very, very grateful that he could extend his stay a day to drive us home.  We had a good couple of days, on Wednesday, we went to Antelope Island State Park.  Neither of us had ever been there and we learned a lot about the Great Salt Lake and the Island.  We got to see a number of Bison as we drove along the east side of the island but never say any of the other 3 large mammals, Mule Deer, Big Horn Sheep or Antelope.  On Thursday we went up to the Park City area, I was hoping to show him the zip lines that they have, unfortunately, no one was using any of the facilities, but we were able to see all of them and it got him interested to see again sometime.

Friday morning we got up fairly early, packed the truck headed up to the hospital for my exit interview.  It must have gone OK, because by 9:30+/- we were heading down I-15 with our backs to downtown Salt Lake heading for the point of the mountain and southern utah.  We had a good trip and were able to stop in Parowan for a few minutes to see mom and dad before getting home mid afternoon on Friday.

That pretty much brings me up to date, thanks so much to everyone that helps, has helped, will help our family during these trying times - more on that later.  hope everyone is well and safe,  until next time.

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.

Pre-admittance tests and working out the logistics for Patty

Today and tomorrow are a couple of very early days for a retired person. The alarm clock said 4:35 this morning and will say about 5:00 tomorrow (Friday) morning. I made the trip alone today up to St. George to get the majority of my tests completed in preparation of going to Salt Lake on Oct. 12th, doing the last checkup and interviews on Oct. 13th and then getting admitted on Oct. 14th to get my direct line put in and start the process of Chemo and the introduction of my stem cells back to me to complete the transplant process. Tomorrow morning (Friday Sept. 26th) Matt is going to drive me up and especially back from Dr. Te's Office as the one remaining test that I need to complete is another Bone Marrow Biopsy procedure that we are having done at Dr. Te's Office at 8:30 am. I am grateful to Matt for getting off to be able to take me up. After the Biopsy tomorrow, we'll find out what all the test results were that I am doing when I check in at the BMT Clinic on the 13th. After finding out the actual dates that we were talking about, Patty, the kids and I all got together for dinner last night (Wednesday) to talk about the logistics of 24/7 coverage for Patty while I am gone to Salt Lake. Then Patty talked with our two primary caregivers today (Cora and Patricia) and it looks like with a huge amount of help and dedication by everyone, we are going to be able to make it work. That's not to say that there won't be some challenges come up from time to time. I'm sure that the basic schedule will work most of the time, but guarantee that it will have to be adjusted as time goes on to accomodate changes and issues that will come up. As the plan stands right now, I think that Amanda is going to drive up with me on the 12th and then we'll fly her home the evening of the 14th. If the inpatient stay goes about what it should, Matt will likely fly up around Halloween weekend to help me get moved to a close hotel/motel that I will call home for another 3-4 weeks or whenever the BMT kicks me loose to go back to Dr. Te. It will probably be close whether I spend my birthday in Salt Lake or not. I hope that things go well enough that me and my hepa filter mask can make the journey back home to be with the family for my birthday and for Thanksgiving the following week. I am not looking forward to the process, but I am looking forward to getting through these procedures and getting back to a better place with better numbers. I hope that everyone is enjoying the start of fall, we here in vegas are looking forward to it cooling down a little bit, but I don't want to wish a lot of cold and storm on people that live in other places and climates. everyone be safe and well, until next time.

Let the pre-admission tests begin

My last post talked about going to see Dr. Te to get the latest blood results. The M-Spike is stuck on 0.4 so Dr. Te called Dr. Petersen with LDS Hospital's Bone Marrow Transplant Clinic (The place and people that took care of me before). They still have one dose of stem cells on ice waiting for me, although I was hoping that I wouldn't have to use them for a few more years, but that's life. Anyway Cindy Nordling my patient coordinator is busy setting up my pre-admittance tests with Dr. Te and Dixie Regional Medical Center to get final approval from my Insurance company to perform the transplant. Cindy as set up the Bone Marrow Biopsy (yes another one) with Dr. Te for Friday Sept. 26th early in the morning so I'll have to get a volunteer to go up with me to drive me back because I will be out of it for all day that day. She is working with DRMC to set up the X-rays, scans, and all other tests for Thursday Sept 25th. I'll probably drive up for the day to get those done and then come back home that afternoon. This means that I will most likely be heading for Salt Lake about 2 weeks after the testing is complete - maybe around Oct. 10-15 to begin my 5 to 8 week visit to Salt Lake this fall. We are working with the kids, the ward and all of our caregivers and medical people to work out the logistics to make sure the Patty has 24/7 coverage here at the house or over to Amanda's house for the duration of me being gone and then for when I come back we'll need more coverage than we currently have for a while until I get my strength and stamina back to that I can take most or all of the responsibilities that I do now. We'll have to see exactly what happens. For the next 2-3+ months we will definitly be looking for quite a bit of help and support to get both of us through this. Again I hope that everyone is safe, happy and well. Until next time.

September 12 Dr. Te Appointment

I went to see Dr. Te today, I got to experience the detour through the Valley of Fire between the Moapa Tribal Plaza and the Logandale Exit on I-15 - both directions. More about that later. The good news on all my tests are that other than being anemic and having almost no white blood cells, the rest of my standard tests are still looking very good, my kidney and liver functions are good, most everything is pretty good and has stabilized. The not great news is that I'm still stuck on 0.4 on the the blasted M-spike. Dr. Te is going to call Dr. Petersen at the LDS Hospital BMT Clinic to decide what they want to advise me, I think I'll probably get contacted by Cindy Nordling fromt he LDS BMT this next week to start making plans for the pre-admittance tests, I think they will probably let me do most of them down at Dixie Regional Medical Center since it is owned by the same IHC company. I talked with Patty and Amanda about it a little tonight and Patty wants me to investigate whether it would be possible to use another medicine to see if we can get the number (M-spike) down below the 0.2 level that Dr. Petersen advised us when we went to SLC in August. I'm not sure if it's even possible, but I told her we would investigate the possibility to see? If the answer is no, then most likely I'll finish this round of Pomalyst on Sunday Oct. 5th and either before that, or shortly after that, I'll get the pre-admittance tests done and within about 2 weeks after that I should be headed for the BMT on the 8th floor at LDS Hospital in SLC. Don't know what that means for our Thanksgiving on Nov. 27th, but where ever I am, I'll probably be wearing a masking watching what I eat as far as un-processed foods, it will be great. I'll try to remember to add a little bit when the decision is made for the schedule for October. We had a great time in Parowan over Labor Day. Patty and I really appreciated all that Bruce and Cara did to prepare for our herd and everyone got along very well. It was good to see everyone, and glad we got to spend some time with Linda before she went back to Alabama. The weather was fantastic and the kids and grandkids had a terrific time spending time together for the weekend. We got to ride the ATV's and eat and eat and eat. Back to the detour. Before I start, I need to recognize the hardships that Bruce had to go through this week to get his deliveries to the Moapa Plant this week. I don't know how many trips he had to make, but commercial vehicles were all suppose to go from Cedar City through Panaca and Alamo and then down US 93, so his drive would have added hours to his normal trip because of the section of I-15 that went out was around the exit that he takes to get off I-15 to make his deliveries. I haven't talked with them today, so I don't know if they figured something faster out later in the week, but the first time he had to make the trip was very long and painful dealing with all the semi trucks and other traffic. I can only imagine just how bad that was. I was able to take the road through the Valley of Fire, it was just about an hour going up this morning from the time I left I-15 and the Moapa Tribal Plaza until getting back on I-15 at the Logandale exit. Which means it cost me about 45 +/- minutes to make the detour. Coming home this afternoon I think it was a little longer because there was a semi (don't know why) leading us through the Valley and there were a lot of times we didn't get to even the 35 MPH speed limit. They opened up the temporary road while I was on the detour - near the end of it, so I guess I could have stayed in St. George for another hour and not had to make the detour, but I would have made it hope about the same time. We hope everyone is well, and having a good September. Until next time.

Wanted to share something I was given before I forgot

I don't really have anything to share today other than a link to a web site that I was given by a woman that Patty and I have come to know during the past week. It is a story about a lady with Lupis, that when asked how it feels to be sick without really looking sick by her best friend, she came up with this response. I think this works for a lot of us that on the surface don't appear to be in too much distress, it may also help some of us not to pre-judge some people that park in handicap stalls (with placard) that don't look like they need to. Here is the link http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ I hope you can figure it out. if not, let me know and I can send you a .pdf. Let's just say that Patty and I are watching our spoons, some days I have alot, some days I don't. Patty has to be careful with hers, but it's hard not to over extend yourself. Not too much else, we are getting ready to descend on Bruce and Cara in Parowan for the Labor Day, Iron County Fair weekend. Looking forward to seeing everyone and having a great time with family and friends. Can't wait for those Lion's Club Pancakes Monday morning before the parade. I had to go to my dentist, Dr. Kintonis to get checked out and cleared to do the transplant before I go back to SLC. I didn't have any cavities, but I've got some pretty old crowns in my mouth and he found that one of them needs to be changed because the tooth underneath it is wearing away and creates a problem, so tomorrow (Thurs Aug 28) he is going to prep me for the new crown and then get the permanent one in a couple of weeks. I think the tooth already has a root canal, so it shouldn't be too bad, but hopefully it doesn't get in the way of enjoying all the food and activities in Parowan. I'll be giving some blood the Friday after Labor Day in preparation for my next appointment with Dr. Te the following Friday. I hope the numbers improve from last time. So I had nothing to say, but rambled on for a few small paragraphs. Hope you are all well, safe and healthy. Until next time

Went to Cedar City for test results

I got up Thursday morning and made a quick trip to see Dr. Te. He goes to Cedar every couple of weeks and so this Thursday happened to be one of his travel days. I decided to change my appointment because we have care givers for Patty all day on Thursday and I would have had to make special arrangments if I would have kept it on Friday like always. Besides, it gave me a chance to have lunch Cara and also run over to Parowan and see mom and dad for a while. It was a long day, but a decent day. Unfortunately, all the numbers stayed about the same, so that's the good news, everything is working pretty well, but the M-Spike number remained at 0.4 so that was a little disappointing, hopefully the numbers drop a little bit next month, I'll be giving my next round of blood work right after Labor Day. We are planning on at least 2 more rounds, the first one will start next Monday August 18th and the second one about 4 weeks after that if all works out OK. We are all looking forward to going to Parowan for Labor Day and as I undertand Linda will be in town, we are looking forward to seeing her over that weekend. I really don't have too much else to add this week, Patty and I are still bouncing back from our Salt Lake Trip and then her visit from Pat Nichols the following week, we have been a little worn out, but starting to get our wind back again. Just in time for Labor Day to get tired again but it's all good, we'll have a great time with everyone and it will be great to spend time with he families. Until next time. Hope everyone is well, healthy and happy. Enjoy life, it can be quite fragile.

Back in Vegas to rest and refresh

As I wrote last week, I didn't get any of the tests that we had originally gone up to get done accomplished because Dr. Petersen wants to make sure my autologic transplant has the best chance of success because we really only have one shot at it. So I'll be back at Dr. Te's office Friday after next to see what the current numbers are and then most likely have at least one more round of Pomalyst before going back up for the tests on or around Oct 1st or so. So, that gave us a couple of days to rest up and relax before the long day of Saturday and the wedding festivities would happen - or so I thought. Wednesday we got up and Patty said why don't we go to Ruth's Diner up Emigration Canyon for lunch and then maybe ride up to Park City to look around, Donna had never been up there and we thought she might enjoy it. So after a good lunch at Ruth's, we rode up the canyon and made our way to Park City, we rode around for a while to look at all the growth that has and is happening. It is a far cry from the late 70's and early 80's when the main street was almost a ghost town with boarded up building and some other run down businesses and homes. I guess Mr. Redford and his dream of a Sundance Movie Festival had to help that situation. I'm sure there's other reasons, such as the surge of popularity of Utah's Ski industry, but the area is truly grown up now. Then as we were leaving I got the idea to drive up closer to the ski ramps left from the Olympics that you can see from the freeway. When we got up there, I didn't realize that there were so many things happening around those ski ramps that you can't see from the main roads. We didn't get out of the car but pulled over and watched what has to be one of the most Extreme zip lines anywhere that happens right next to the ski jump. It has over 500 feet of fall. First they pull you up the line at a speed that is faster than most zip lines go down hill, then they turn you around and let you fly down the hill at speeds up to 50 mph. In a better day, I think I want to try it. We watched skiers training on several ski jump hills and another zip line that isn't quite as extreme as the tall one. It's at the Utah Olympic Park complex just off the freeway exit to the Park City area. You should go look at it at least once. Then we left and started down the mountain to head back to the hotel, but unfortunately Patty remembered we weren't too far from IKEA, so guess where we ended up. Luckily it was a pretty quick trip through it, but it still put a little dent in my wallet. Thanks to Donna for pushing Patty's chair quickly and staying towards the center of all the isles, so it could have been worse. After making it back to the room, we go to bed and I as hoping for a nice quiet Friday to rest before all the Saturday wedding festivities. We didn't get too fast of a start on Friday, but ended up going downtown to the City Creek development to look around and people watch for a while. It was a pretty good day not too taxing on Patty, but after going all week, she was still pretty wore out buy the time we got back to the room. So Saturday came, early, very early, I almost turned off the alarm and went back to sleep figuring we'd say our apologies later at the luncheon. I am very glad that I didn't. For those that maybe don't know about LDS temple marriages, and the usually LDS Lunches and receptions that follow - none are too exciting to most non-LDS because of the lack of parties, dinners and etc... that occur at most of the world's wedding celebratons. Well this wedding was pretty typical LDS, so it would have been pretty boring for most, but it was good for us. I joke around with many of my non-LDS friends that we don't do very good wedding celebrations, but we do great funerals, some of you will get that. Anyway, the wedding/sealing ceremony was very good, the sealer that performed the service did a very good job with what can be a very short but very important ceremony. He explained some items that we learn in the temple to the couple and honestly I felt pretty good to be there because I hadn't thought about them for a while. I was really happy that Patty had got up and gone with me. We went back to the hotel and rested, when it was time for the luncheon, Patty was pretty tired out, so she stayed at the hotel with Donna and I went to represent us. It was a nice lunch and Cara and Bruce did a good job finding the place. It was a very nice place with a lot of character and a very nice yard for pictures. Then Patty and I went down to the Sugar House area for the reception in what I think is Liz's parent's ward area. It was in a pretty old meeting house on south Highland Drive just south of I-80. Nice old building with lots of character that we don't see too much of any more - especially in newer cities. It looked like a very good turnout of friends and family. We got to see mom's sister Marie and son Drew that I hadn't seen for at least 2-3 years - mostly my own fault. Dad's brother Kent that I also haven't seen for a couple of years since we were both in Huricane at the same time and got to talk for a while. I also got to talk with Lance and Suzy, we decided that I hadn't seen Lance for at least 4 years since they went back to Florida, We also got to have a good conversation with Daniel that I haven't have for some time. Chris and Liz looked very happy, but tired after a long day and after starting before 8:00 am, by the time reception got over after 8:00 pm, everyone in the wedding party had to be very happy, but very, very tired when it was over. looking forward to seeing everyone when we all end up in Parowan over Labor Day. We usually invade Cara and Bruce for that weekend and probably will until they start complaining too much or have another place to invade some day. This has been a lot longer that I intended, I guess the steroids took over again. Until next time.

Oops, maybe a little do over for some of last night's post

So, we got up this morning and went up to the hospital for my appointment. Anyway today was pretty much what it was suppose to be but when we got to the meeting with Dr. Petersen, he started talking about the proper time to do the next transplant and he explained to us (Patty and I) that the approved numbers for the M-spike should be less than 10% of what my high number was early this year, it was 2.2 so my number needs to drop to below 0.2 to meet the proper criteria. So the decision was made to finish my current round of Pomalyst and most likely do at least one more, so that will push thing out at least 7-8 weeks, and because that is over 30 days from now, they couldn't do any of the pre-admittance tests that I was suppose to be doing tomorrow and Friday, so I was sent back to Dr. Te and Dr. Petersen and Dr. Te will stay in contact and when the numbers drop then I will have to make all the arrangments again although there is a good chance they will let me do a lot of the pre-admittance testing down at Dixie Regional Hospital since they are also part of the IHC family like LDS is. So, I'll keep the appointments for blood labs and review by Dr. Te in August and go for another round of Pomalyst and see what is happening towards the end of September. Oh well, we'll have a good couple of days in Salt Lake and a mini vacation until everyone gets up for the wedding on Friday, until we'll try to show Donna around a little, go to IKEA maybe and find some fun things to do. But rest too. Until next time.

If this is Tuesday night then it must be the Salt Lake Valley

Well, yesterday, Monday was the last day I will have sat at my desk at my job as City Surveyor for the City of North Las Vegas, Nevada. Technically it's still my job for another 1 day and 17 hours (4:00 Thursday), we are in the Salt Lake Valley and will be until Sunday morning when we travel back to Las Vegas. The last week has been kind of, no pretty strange, I spent most of last week trying to get ready to clean out my office to take my piles of "stuff" home, Hello, my name is Bart and I am a junk collector, and I had collected almost 20 years of junk. Anyway, I kept getting interupted by work and well wishers so I got almost no cleanup and packing done until Thursday when I managed to put 90% of my stuff in boxes, unfortunately by the time I got it in the boxes, I was totally worn out and wasn't about to carry it out to my truck in 105+ with humidity, so I postponed the carrying until fairly early Saturday morning when it wasn't quite 95 degrees when I finished. A weird thing happened when I loaded the truck with the second and final cart of "stuff", I got in the truck and started it, but it took me a while, probably a shorter time than it felt like, but I really had a hard time putting the truck in gear to drive away. I guess it finally hit me, or it became very real at that time, I am leaving, I don't work here any more. I'm still trying to get use to that. It will probably take some time. The people in Public Works used my leaving as an excuse for a very good pot luck lunch on Wednesday last week - which was very good and I couldn't begin to try everything that was brought for lunch - somethings I couldn't try because it was very hot and spicy and my current situation is not very condusive to hot and spicy - especially the spicy and anything with a tomato based sauce - I don't know if there are enough TUMS to get me through the night anymore when I forget that rule. Then after the pot luck lunch - which was by invitation - they had a cake open house for me when the rest of the building could come down and say Hi and good bye, it was quite nice and a few people that don't work for the City anymore came to see me it was very nice Randy, JoMar, Patti, Chris Z. and some others that work at the City but I don't get a chance to see on a regular basis. Yesterday on my last "working" day I took our little Survey group out to lunch, it was a small group compared to the group we had just 5 or so years ago, I have always been grateful for the very good people that I was fortunate to work with at the City over the years, and was very grateful for the quality of all the work they did and still do, it gave me peace of mind since my license was dependent on their good work. I do have to go back to City Hall next week Monday or Tuesday to pick up my last check and turn in my keys, ID badge, and other City issued items. I will be a visitor then so I will have to most likely have to sign in at the information desk before I start harrassing the workers. OK, enough about that. We are up in Salt Lake for a couple of reasons, tomorrow - Wednesday - I start my interviews and tests with LDS Hospital in preparation for my sutologic stem cell transplant that I have talked about before. On Wednesday I check it, get a physical and give them my medical history and then meet with the Doctors from the BMT (Bone Marrow Transplant Clinic) on the 8th floor of the LDS Hospital where I spent a good portion of the spring of 2011. On Thursday I get a full body Skeletal survey (X-Rays) including chest x-rays to see how the insides are doing and to check for any additional myeloma caused bone problems that thankfully up to now have not been very apparent and have not be any problem to me. On Friday I get a Pulminary function test, I get to give that a bunch of blood and other fluids, and then to finish off the day, I get to have another Bone Marrow Biopsy performed. They always save the best for last. It takes 7-10 days for some of these test to mature to see what is really happening, so not sure when I'll have word on how fast they want me to return for the transplant, hopefully around the first of October, that will give us time to get the logistics in place to leave Patty with full support at home in Vegas. Based on the second transplant I had, I anticipate this time will take 6 week +/- of which I will be up here alone most of the time other that some weekends and maybe when I first get discharged to find a motel with a kitchenette so I can remain somewhat isolated for the first few weeks, those who saw me when I first got back last time noticed that I wore a mask and didn't touch anyone for quite some time. The second reason of course is to celebrate the wedding of Liz Robbins and Chris Dickman. We are very much looking forward to all the good times that will be had on Saturday. Then we will have another long day on Sunday getting everyone back to Las Vegas to get on with the next chapter in our lives. Many, many thanks to out to Donna Arnold, Patty's good friend for agreeing to come with us to help this week, we are very happy she is here and hope to have a good time up here with here. I promises to be an interesting week and I'll give more information about it after it happens. Well, until next time

Just another steroid induced Tuesday

The last post early in the month talked more about family and other things going on because I didn't have too much going on personally, so I told all about our trip to Parowan to seal the garage floor and get rid of a bunch of weeds. It really was a very good weekend and I do still really thank my boys for all the work in the garage and Ryan and Amanda for transporting and arranging for the beef and of course Bruce and Cara for allowing me to steal their tractor mower. Now, I gave blood on July 11th like I was suppose to and then Patty and I made a semi-quick one day trip to St. George, then Cedar City, then Parowan before coming back to Vegas in a 7:00 to 7:00ish trip in one day, it was long, but it was a good trip. The results with the blood test were quite good again, I had contacted Dr. Te earlier in the week to see if he would look at my results as soon as he could so that if I needed a blood transfusion we could make the arrangements earlier and be able to plan for it since I was taking Patty with me and figuring out the logistics of when my appoint would be. But all of that was for nothing because Dr. Te called me and said that the blood tests came out OK and I didn't have to have the transfusion. My red cells were above the need and the other factors looked good too. My white blood cells are very low, but we have to live with them for a while. Anyway, got to Dr. Te's office Friday morning and he went over the latest blood tests with me, my IGG continues to drop it went from a mid range normal of 1150+/- down to around 700 which is low range normal, he was very pleased. The M-spike number dropped from 0.7 down to 0.4, which is the more important number that gets looked at for the transplant numbers. I also had contact with Cindy Nordling, my patient coordinator at LDS Hospital in Salt Lake where my first and my next autologic transplat will happen when everyone is happy with my numbers sometime in the next few months. Which will in itself will create another whole set of logistic problems for us. We are getting ready for a couple of other items I officially leave the City next Thursday July 31st but unofficially it will happen before that because we are leaving next Tuesday for Salt Lake so I can get the tests and appointments done at LDS Hospital in preparation for my next autologic transplant, then stay over the weekend for the wedding of my nephew Christopher Dickman to a lovely but mentally questionable (she picked Chris) you lady Liz Robbins that comes from the Sugar House area of Salt Lake. We are really looking forward to the trip for several reasons, we are super happy for Chris and we'll also be able to see Lance and Susy and their kids that live in Orlando, we have seen Susy and the kids each year, but I haven't seen Lance for several years which I am looking forward to. It will be a long and full day next Saturday because it begins before 8:00 in the morning and the reception gets over after 8:00 at night - Long Day. We also got some good news, Patty invited and Donna Arnold our good friend decided to drive up and stay with us to help Patty and I with the trip and they can spend the Wednesday, Thursday and Friday time having some fun while I am waiting between appointments at the hospital and I will have someone to drive us back to the room after my latest bone marrow biopsy that will most likely happen last, sometime on Friday. Because they won't let me (nor should I) drive after getting it done. I will write more when we come back until then I hope everyone has a good week and a great weekend, we will write more soon.

Thank goodness for our boys

It's been a couple of weeks since I posted last, nothing to really tell, my next blood letting isn't until this friday July 11th, with appointment being next Friday the 18th, I think I've said that several times. we had a pretty uneventful couple of weeks, until last weekend. Patty and I were both struggling with some of our issues, it would have been better for both of us if we could have tossed them both into the sky and each caught half of the other one's. We would have both been happier. Last Weekend, we left home last Thursday July 3rd. We had been planning on sealing the floor of the Parowan Garage for quite some time, but this happened to be the first weekend that all the kids had Friday off, so Patty and I went to Coral Canyon Thursday and since Bruce and Cara had to come south to pick up some supplies that evening, we met them at Iggy's for dinner and then went back to the house to visit for a while before they headed back to Parowan to get some sleep before heading out with Krystal for the weekend. I am very grateful to them for all they do for us and for opening their home up to us to rest and relax while we were up working on Friday and Saturday. Ryan, Amanda and Holden went to Richfield for a Stewart Family get together for the 4th of July, they had a great time and we were happy for all the things they got to do. We got to watch (sort of) Maggie and Zoe for the weekend since they were staying at a motel. They also arranged for some beef for us in Beaver - FYI Connie's brother is the butcher there. Anyway, Friday Patty and I went up and bought most of the materials needed to seal the concrete floor of the garage, I would say all, but when Josh and Matt came up later, they actually read the instructions on the epoxy paint kit and noticed that I had forgotten a few things that would make the job better and more complete. I also borrowed Bruce's weed-eater and stole his yard tractor - I was suppose to use dad's old riding mower, but I must not be smart enough to get it to work because it had a flat tire, that even after putting a can of fix-a-flat into it, it still wouldn't hold, so the tube inside must have been totally shredded. And the transmission must somehow trigger something to make it not work when it is uneven like that, because it would not go into gear for me except to make on run out to the street, and then it quit, then after a lot of struggling, it almost made it back to the garage. So, that is when I became a thief and stole Bruce's good old John Deere tractor mower. It worked wonderfully, but I probably owe him some new mower blades - when I confessed to them, I did offer to pay for new blades. Anyway, the steroid induced rambling continues. The boys came up late Friday afternoon and cleaned out the garage to get it ready for the next day's sealing party. Saturday the boys got up early and left the house before us to get the materials to get started on the garage floor. Patty got up and after spending more time getting ready that we thought we would headed up the hill to meet the boys. When we got there Josh and Matt had finished acid washing the floor and were just getting started painting the epoxy paint in the back, if you've neverdone it, you put in down in small squares and rectangles so you can sprinkly the colored flakes around to give it a little texture. Because they were all worried about me, my job was to sprinkle the flakes and to be honest, I did a lousy job. They did let me roll a couple of sections, but then they stole my roller and gave me the flakes bag back. I was doing a prett lousy job for about 2/3rds of garage when I made the decision to sit down on one of the paint cans for a while, when I saw they had painted enough that I better get back to my lousy application job, I stood up - I guess a little fast because as I was approaching the wall to get started with the flakes I started to wobble and tried to make it to the wall, Josh noticed I was going out and ran over to help me, He grabbed around me and helped me get to the floor without hurting myself. After that, they walked me to the truck and made me get in the air-conditioning with Patty while they finished. They didn't trust me the rest of the day. When they were about done, they sent Patty and I up to get water and drinks to take over to Bruce and Cara's house to rest for a while until the floor could dry enough to close the doors. While we were at Maverik getting the drinks and some gas, Ryan and Amanda showed up to get some ice to put in all the coolers that we had been hauling around for the beef they were bringing back. We all went down to Bruce and Cara's and Ryan loaded up the coolers and put them in the shade until it was time to leave. In the mean time, Josh and Matt came down, we had some lunch and we unloaded one of the 4 wheelers to Ryan, Amanda and Holden could go on a little ride together. Later Ryan and Josh went up to the garage to look at a couple of things. We finally got ready and went to Coral Canyon to get our stuff and clean a little before heading back to Vegas with a wrapped cow in our truck. As I said at the start, thank goodness for our boys this weekend. Not to dimish what Ryan and Amanda do for us all the time, but I would not have been able to do the garage floor without Josh and Matt putting aside their long weekend to help or rather do this for me, and I would have still been trying to finish the job later this summer without them. My next blog will probably even have some medial news in it, hopefully it will be good medical news. Until then I've got some calls to make to finish determining some decisions that I need to make before my last day of work (officially July 31st) It's hard to decide what to keep and what not to keep after having everything be taken out of my paycheck for these many years. Hope everyon had a great 4th of July weekend and got to enjoy the holiday in what ever manner works best for you. And while Patty and I both have our issues, I am so grateful to be living in this great country, even with the problems we have it is still the greatest country in the world, even though some people have forgotten many of the reasons why. I will close now before getting into any political views. Again, hopefully everyone had a great weeked and you all had a safe and fun time - what ever you were doing. May you all be blessed and happy.

We had a very good weekend in Orange County

Not too much medical to talk about tonight, maybe next week. I have been on my week off beween round 3 and 4 of the Pomalyst. I'm just starting to get back to something resembling normal as far as eating and other bodily functions, so tomorrow night, Monday June 23 I start round 4. I won't have any new blood work for a couple more weeks, but still hoping that things keep progressing as well as they have up to now. The PERS (NV Public Employees Retirement System) Board heard my case last Wednesday and when I called on thursday, they told me that I had been recommended for acceptance for a Medical Retirement. When I get the official letter sometime this week, I'll have to start making the final plans, I plan on officially retiring on July 31st. the way PERS works, it will make a difference on my monthly pay. More on that as I learn more. As the label above says, we had a very good weekend in Orange County with Holden and his mom and dad and with Matt. Josh couldn't come because he is in the middle of buying a house and had some things he had to take care of. We drove down Friday afternoon and stayed in a Radisson Hotel that one of Amanda's friends got us a great deal on. We decided to take Holden to Knotts Berry Farm. Yes, he's still a little young to really enjoy it, but Patty and Amanda really wanted to do it. It worked out pretty well. We got an online deal on the tickets and he enjoyed a few rides and do did everyone else. I on the other hand am expecting a visit from the spouse abuse police for a couple of my bone head moves. First, we were so careful to pack everything we thought we might need to help Patty for the weekend. I even took her bipap air machine to help her breath at night and help her breathing and diaphram issues. But I forgot the water reservoir that it needs to function, I wrapped it up ready to pack, but somehow it didn't make it in the suitcases. Second, when we got to the hotel, they did a great job of getting us 3 rooms next to each other at the end of the hall, ours being what they consider an accessible room for Patty and I. We took her in the room, somebody set the room key cards down and we all left the room to look at the other rooms and unpack the cart. Patty was pretty wiped out from the car ride down, so I had to go down to the desk and get another key, she was only alone for 15-20 minutes, we tried to get her to roll to the door, but she had trouble moving on the carpet to get to the door. But Third and the best was at Knotts Berry Farm. Amanda, Ryan and Matt wanted to go on a big people ride, Holden was sleeping in his stroller and Patty and I watched him and let her rest by leaning her back to releive the pressure on her neck (this was not the bad thing - this was good). While we were waiting, I kept looking at everyone walking by with their drinks and I was getting more thirsty all the time, so when they made it back from the ride, we started heading back to the Camp Snoopy area to give Holden a little more, I got to a point and remembered about Dipping Dots, so I gave Matt money for Dipping Dots and Amanda and I saw the drink station where we could refills on our souvenoir cups, so Matt and Ryand got the Dipping Dots, and Amanda and I went to get in line for the drinks. I didn't think a bit about Patty at this point, just figured that Matt had her. So we got our drinks, and started walking towards where Matt and Ryan would be. When I saw Matt, it rang a bell in my head - where's Patty. I saw Matt looking over my shoulder, so I turned around and a little girl was talking to Patty to see if she was OK. We, or I had left her in the middle of a large walking area by herself, in the sun we we got what we wanted. She was OK, but it really was a terrible thing to do to her. We tried a new place for breakfast before we came back today. It is called "Bruxie" and they serve waffle sandwiches, we went to one in Irvine, but Yelp told me there are several in the Orange County area, it was pretty good and the waffles were light and very good. There are several in So Cal and I guess one in the Denver area, I had never heard of them, but would definitely try them again. Like I said at the top, not very much medical to report, but wanted to make mention of our little weekend getaway it was nice and glad we did it. Thanks to Matt and Amanda for helping me with Patty, it made things a lot better, she is tired, but we are all glad we did it. Until next time.

went to see Dr. Te - pretty good news

It's been 2-3 weeks since I posted last, not really to much to report during that time other than some definite issues with side effects from the Pomalyst, I kept thinking to myself that it sure would be nice if things keep working like after the last set of blood results, because it would be not good to put up with my internal issues if the numbers weren't improving in a like manner. The good news is that that the Pomalyst seems to be working very well. I gave blood on June 6th, about half way through my 3rd round of Pomalyst. When I went to Dr. Te's office on June 11, he showed me the results and it was very good, encouraging news. My IGG score that was 3450+/- before Round 1 was down to about 1150 - in the normal range. Also the M-Spike that was up to 2.2 was down to 0.7 - they want it down around 0 to have the best results for my transplant when that is ready to happen later this year. Of course, I'm still anemic, probably always will be, but my liver, kidney, glucose and other general items were all looking pretty good as well. So, I'm starting Round 4 in about a week, and going back to Dr. Te's office on July 18th after giving blood on July 11th. I will probably go to Salt Lake to LDS Hospital for all the pre-transplant tests either the last week of July, or first week of August if I can work it out with them to work out the schedule with Chris and Liz's wedding on August 2. I hope it will work out that way. I still haven't found out for sure if PERS is going to approve my retirement, I know I am on the agenda for this Wednesday (June 18) Agenda, they said last month that I could call Thursday morning some time to find out the results while I wait for the official letter to let me know. I'll also have news of our trip to Knotts Berry Farm this weekend, I think we may be asking for some trouble, but everyone (read Patty and Amanda) really want to take Holden to an amusement park while we still can, so we are going down Friday and looking forward to a great time on Saturday. I will report our trip and how everyone got along on my next report. Patty is having some issues, we hope it's just a small dip that will come back, we also have a pretty steady supply of caregivers, cna's, nurses and others coming in and out of the house to help her. It's still a little weird to always have people around, but it's been a big help to Josh and myself to have some relief to help us most days and 3-4 nights a week especially when my side effects are in full force. When we signed up with Creekside Home Care, we didn't realize just how involved in our life they would really become, we are starting to find out. In a way it is pretty strange because of all the work we have been doing with Patty over the past couple of years. Creekside takes over much of that most times that is good, other times it still feels somewhat intrusive. But it's getting her better care, so we'll do it. I understand that the Pronks have made it safe to Alabama, we wish them well and hope for the best for all of them as they start their new adventures in the southeast part of the country. We also are very thankful for all the good thoughts and prayers that are on our behalf, they do work and help us greatly. Until next time We hope everyong is having a great summer, having fun and doing new things.

Another Dex inspired blog tonight

I started round 3 last night and I also remembered to take my Dex to help the daily poison work better, so I slept good last night and had good energy today and of course don't know what to do with myself tonight. I'm hoping I getting use to the Pomalyst for this round that might reduce some of the side effects that I have been dealing with before. I forgot to take my Dex last week, but don't really know if I should be taking it when I'm on break. I ask Dr. Te once and he said it was OK to take, but if it's not in conjunction with the Pomalyst don't really know what the benefits would be. I'll have to look into it better. A couple of weeks ago, my mouth was on fire, I've had so many sore throats and coughs that it took me a while to figure out that this was something different, so I finally called my dentist Dr. Kintonis to ask for a refill on the prescription mouth wash that he gave me when I was going through chemo before to fight off mouth sores - it worked very well before. I started taking it during the last part of my 2nd round and I think it is going to help. During the break, the burning went away so of course I forgot to take it all the time, but I imagine that over the next week the burning will try to come back and I will remember it a lot better. Patty and I had a pretty quiet weekend, we went to a movie on Friday and went to lunch and shopping on Monday and in between did some good resting that helped do the other stuff. Amanda, Ryan and Holden took off last Wednesday along with my ATVs for a trip to Moab with their friends Walt and Lexi. They had a very good time and made it home on Sunday to see Amanda's friend that was here from Minnesota. Josh got out of town for a couple of days and stayed in Coral Canyon. He took Addie and they had some good Hikes. Not too much else going on, we have a good group of care givers coming in to help us with Patty these days and a couple or three evenings. It is really helpful for me, I feel very lazy but there are nights that I just can't do the physical things that have to happen, especially when she is having trouble with her passing out which seems to come and go a little more that a couple of weeks ago when she was passing out a lot more that normal. Many thanks to Ameila, Cora and Patricia and to Amanda and Josh for helping us find them. Currenly I don't have to go to St. George to see Dr. Te until June 12th when I'll be getting my Zometa again and get the results of the blood testing I will be getting on June 6th so all the tests will be done when I get to Dr. Te's Office. Well, I've ran out of things to ramble about, so I'll quit for now, until next time, we hope every thing is good for you. until next time.

memories of our trip to Nauvoo last year - because Nicole is thinking about taking one.

This is a hopefully short narrative on our vacation to Nauvoo that we took with Ryan, Amanda and 5-6 week old Holden during June of 2013. Ryan and Amanda needed to go to Nauvoo to meet his family for a small reunion there. It was only a 3 day get together with his brother, sister, mom and dad and nieces and nephews. Patty and I had been to Nauvoo briefly about 5 years earlier with Latter Day Tours when we went on our 2 week bus tour of many of early church history sites, we always wanted to go back, so we took the time and agreed to help rent a RV to drive us. We believed that Holden would be difficult at times being locked up for all day so we planned about what we thought he could handle, as it turned out, he handled pretty well, it was the rest of us that were ready to get out of the box at the end of each day. We also decided that we would see Mt. Rushmore on our trip because we planned on going through Omaha, Scotts Bluff and Martins Cove which put us about as close as we ever thought we might be again. So because of our timeline, we decided to start at the Salt Lake end and end up in Nauvoo with the Mt. Rushmore detour and then come back through Missouri and across I-70 and home to Vegas. We started in Vegas, so we went north along I-15 to Provo, up Provo Canyon to I-80 and spent the first night in Evanston. I should probably add that we didn’t stay any nights in the RV, it was only for ease of travel and to carry all the stuff that a newborn needs carrying whenever you go more than to the grocery store. We took naps on the bed between driving, and used the cooking, cooling and hygiene facilities so it was very nice to have, but Patty and I weren’t up to “roughing it”. Getting back to the story, we got up the next morning and drove I-80 to Rawlins, we turned north out of Rawlins and then turned east on route 220 to go to Martin’s Cove, Devils Gate, the Mormon Handcart Museum and Independence Rock. We weren’t able to take the walk to Martin’s Cove because of the baby, but we parked at an overlook and saw up into it from across the valley. At the end of day two we ended up in Casper WY to spend the night. Day three started out in Casper and then we went east and north, northeast to make it to Mt. Rushmore. It was a beautiful day there with large fluffy clouds and we got some pretty good pictures, but again we couldn’t really take any of the hikes and weren’t there very long. The movie was interesting to see how everything was transferred to such large sizes. There are actually a few other things to do and see in the near area but we needed to get back in the RV and make out way to Scotts Bluff NE to stay the night. That got us back to the Mormon/Oregon trail area for our next day of travel east to Omaha to visit Council Bluffs visitor center and the pioneer cemetery that is across the street next to the temple. I did make us take a small detour from the Oregon Trail to go through the small town of Dalton NE, we had to stop and get a picture of their water tower to add to my screen shots. So at the end of Day 4 we were in Omaha. The morning of Day 5 we got up and made our way to the Council Bluffs Visitor’s Center and Cemetery. It was very well presented and we are very glad we made it there. After going through things, we hit the road and decided to make a little better time than taking the trail to Nauvoo ,so we stayed north through the center of Iowa, we went through Des Moines and then made our way southeasterly to the corner of Iowa and Patty and I stayed at a nice Holiday Inn Express at Keokuk, IA that we had stayed at before. It is a short drive from Keokuk to Montrose to the North where you can look across the Mississippi at Nauvoo. I suggest going before dusk as the sun really shines off the temple across the river. The next morning we went over to Nauvoo and did a few things that we weren’t able to do on the bus tour. I don’t think you have to spend more than about 2-3 days there to really see and do most things, make sure you allow time to make it to Carthage, the Visitors Center there has a great presentation and go can go up into the rooms and understand better what happened there. There are lots of things to do and see in Nauvoo, there are programs and plays and live demonstrations all day and into the evenings, make sure you catch the trail of tears, trail of hope presentation that is a walking tour that gives insight into some the of thoughts and feelings of the pioneers as they are being kick out of their beautiful city, including Dr. Priddy Meeks. When you are ready to leave, you have a couple of options for travel, you can take Iowa highway 2 to the northwest for a while to follow the original pioneer trail, or go in a southwest, west direction on surface highways to get to Adam ondi Ahman. It is really a beautiful place, there aren’t really any structures to see, but the valley is very pretty and the missionary/workers take great care of it while they do a little here and a little there to get it ready for the important work that is in front of it. While you are this close, drop into Jamesport Missouri to visit a great little Dutch Bakery and buy some cookies, cake or a pie from them to enjoy when you get to Far West which isn’t too far away from there. You will also see evidence of a pretty large Amish community in this area, they have some great looking carriages and horses that are usually parked around town and if it’s auction day, they will be at the auction on the east end of town. Then leaving town we went west and south to make it to Far West. The church owns the temple site and has an open air visit area to look at the 4 cornerstones that were placed before all the Apostles set out on their mission that was prophesied. From there it’s not too far into the Kansas City / Independence Area where you can spend the night before hitting the Liberty Jail and Independence Visitor’s Center the next day. It is one of my favorite Visitor’s Centers. The area around the visitor’s center is owned by other off shoots of the church, most notably the Community of Christ. We don’t own the temple site yet, but eventually the owner’s will want / need some money and we’ll get it. The next morning we left Missouri and traveled to Goodland Kansas, near the Colorado border to spend the night, it was just a place to sleep. We got up the next morning and went all the way to Grand Junction to spend our last night on the road. I had never driven I-70 through Colorado, now I can say I did and hopefully never have to again. The next morning we got up drove to Richfield to visit Ryan’s family there and then headed for Vegas and home. It was a long tiring trip, but we are all very grateful we were able to make it. We all learned a great deal and the spirit is very strong in many of the places we were able to visit. It was a long drive, but a fairly easy drive and nothing too tricky ever. I wrote this to remember the trip, but also because Nicole and Rance are thinking about taking a vacation this summer and maybe ending up in Nauvoo. Of course the trip could easily be taken in the reverse order as Nicole’s friend did last year, this way worked for us, but there are many ways to make it just as good or better. The Latter Day’s Tour I talked about flies you into Kansas City then you go on a bus to Nauvoo, Kirtland OH, Gettysburg, Washington DC, Philadelphia, NY City, Susquehanna PA, Vermont, Palmyra NY, Niagara Falls and a few other places along the way for about 2 weeks then you fly home from Cleveland Ohio, it was a great trip and you get a very nice book full of stories and facts about the early saints. Ginger has been doing the trip for years and puts a lot of effort into making it a special trip for everyone. Hope you can put up with something like this every now and again. It’s nicer to remember some good times rather than dwell on a not so great week end around here.

Quite a week

Well, I started my 2nd round of Pomalyst about 10 days ago, a couple of days later I came down with another cold and then it was Holdens 1st birthday party and then I got really sick to I called Dr. Te and of course got some more antibiotics, which is probably the 5th or 6th dose they've given me since the first of the year. my blood numbers were a little better, but maybe I should have gotten another transfusion it might have helped fight off the cough, cold what ever has taken me over. I made it through most of work this week, but was very tired and beat at the end of each day. I am having some pretty good side effects from the Pomalyst, but still don't know if it was enhanced by my cold situation, but thank goodness for Josh because there were times this week that I just plain didn't have the energy to do much at all and he jumped in a to great care of Patty, I have to really thank him because I get tired and quite short with everyone, but although I recognize that, it doesn't help me while I'm in the middle of one of my moods. So, it's mother's day today. I am so glad for all the great women in my life, of course my mother Claire, my great wife Patty, our new mother Amanda, and of course Grandmas Mortensen and Bastian that always showed great strength and faith during their time here on earth. I am also very grateful to Linda, who for several years treated Patty and I just like a great mom would. I'm thankful for my sister Cara and my other sisters Beverly and Connie. To all the great women we know, thank you. So I've got about 10 days left on the 2nd round before I get the week off, I'll be getting blood work done to see if I have any left in there that can help me, or if I have to get another transfusion. On the 21st of May PERS is suppose to vote on whether to grant me a medical retirement, which if they agree, I'll probably retire around July 1st. We thought a lot about it, and I didn't want to go out yet, but with everything going on in our life, it makes more sense. I'll let you know how the vote goes. I hope everyone is safe and well and has great plans for a fun summer.

What's up - or down - with my blood

Last week I shared a little about getting the transfusions, and about how Quest lab didn't get a result from my blood last Monday. So Tuesday Dr. Te called and I went and gave them some more blood - I took my Pomalyst on Tuesday night because that was suppose to be the start of my 2nd cycle and I hadn't heard any reason not to. Well, Wednesday Dr. Te called me personally and told me that my blood numbers were still pretty bad, and so he didn't want me starting the Pomalyst yet, we would let my blood cells go for a week and take some more blood next Tuesday to see if the White cells could get above 1.0 and the reds could come up to a place that wasn't too dangerous for me. So I won't be surprised if I have to have a transfusion next week. Hopefully I will know by Wednesday and get on with the treatments. It has been a goofy couple of weeks, I was encouraged by the first round results, but the longer that I don't start the 2nd round, the more time I have to think about the side effects. We'll keep working towards the goal. We also have had a couple of very interesting weeks with Patty. She is strugglng with her hypotension (really low blood pressure), she got some tests done by one of her doctors and unfortunately, the test came out clean, so we're not sure what is causing the problems, she has gone through issues before, hopefully this bad time will pass soon and she can get back on a little more of a level plane. Well, maybe by next weekend, I'll have some answers instead of a blog full of questions like today. We are looking forward to next weekend, it is Holden's 1st Birthday. Amanda and Ryan have been working so hard at their new house to get everything ready for the party and we are looking forward to seeing some family next weekend. Hope everyone is well and your health is good. until next time

We are starting the Dex again

Imagine that, two blogs that close together, don't get use to it, I know I won't keep it up. as I said before, I went to Dr. Te's office last Friday, he gave me a prescription for Dexamethezone again, a weekly dose just like I did 4 years ago, I went to my old blogs to try to get some idea what had worked for me then. they were kind of funny, if I took them too early I was up at 4:00 am blogging. Anyway, I took the first dose last night and it was late enough that I slept pretty much all night. This morning when I work up I remembered the "side effects", I was jacked up and shaking for most of the morning, it wasn't too fun, but did subside a little after lunch and I was able to stay a work longer than I thought I would this morning. Unfortunately I did have to leave early because I got a call from Dr. Te's office telling me that I had to go back to Quest to get some more blood taken for a CBC because the one they took yesterday evedently wasn't taken care of and my blood "clotted" so they couldn't complete the test. The lady took two vials this afternoon, hopefully one of them will work for the test to see how my blood is doing to find out whether I have to get a transfusion this week. I am planning on starting my 2nd round of Pomalyst tonight unless I hear from Dr. Te in the next hour or so. Patty continues to be struggling a little. we are working on that and hope that she makes some improvements this week, Amelia is helping her a lot. Until next time. Happy belated Easter to everyone.

Well, it looks like "Here We Go Again"

It has been way too long since I wrote down some thoughts, about a year. A year ago we were going along pretty well, I had achieved "technical remission" and my labs were all coming out how Dr. Te wanted to see them. That continued through the summer, the fall and through most of the winter. Mean while, Patty had a decent summer, but as we passed Labor Day and headed into the fall and winter, it seems like her issues were becoming a little worse every few months and didn't seem to recover to where she was before. We made the decision go back to Dr. Farbman as her doctor and they gave her issues a name, we had suspected for quite some time, but they actually wrote it down. Multiple Systems Atrophy. I won't go into any details here just yet, but it is no fun for her to put up with. I will let everyone know how she is doing from time to time, but only when I clear it with her. Anyway, getting back to me, starting around Christmas, I started getting sick off and on for the next couple of months or so, I probably should have recognized that something strange was happening, since that kind of happened 4 years ago when I was first diagnosed. I just thought that it was a particularly bad strain of stuff going around and between home and work and everyone, I kept bringing a cold, cough and sickness home with me. I had several boughts of anti-biotics that would take it down for a while, but then it would come back. In Sept. Dr. Te had backed me up to an every 12 week visit cycle because I was doing so well. Anyway, he took some blood in Feb. (I think) and didn't like the IGG, it is suppose to be under 1600 and it was 2971+/-, so he scheduled a bone marrow biopsy, because I really think he likes poking people in the hip. I guess it was a good thing he did, it confirmed that my Revlimid had decided not to work on me anymore. We knew that eventually my body would stop working with it, but everyone were hoping it would be a while longer before that result. So, when we got the news that I would be needing new medicine a couple of somewhat interesting things happened. First, I got a call from Cindy Nordling from LDS Hospital the day before Dr. Te gave me the results - she didn't tell me much, but didn't really need to, calling me was enough. Next, when Dr. Te gave me the news, he said that the specialty pharmacy would be getting in touch with me sometime the following week (this was Friday) About the time we got out to our car, I got the call from the pharmacy. The nurse informed me that my co-pay for this new medicince (It is called Pomalyst) would be $4600 +/- per month. I don't know how many remember that for a while with Revlimid I had a $2100+/- co-pay each month until about 20 months ago. So, I told the nurse that I wouldn't be getting the medicine under those conditions and I would get back with them. I called my insurance and to make a long story short (which is hard for me) it ended up being $50.00 a month. I can live with that for a long time. So I'll take a picture and post what $10,000 worth of pills (21 of them) looks like. The other great thing that I've been enjoying is my blood transfussions. The day after my bone marrow biopsy I had one and then a week or two ago, I had a double. Other than when I was in LDS Hospital and got some platelets, that was mty first red blood cell transfussion. I go back to Dr. Te next Friday April 18th to see how I am doing and I will have to go to Salt Lake during the next month or so to get checked out for what will eventually another transplant of my stem cells that they still have on ice for me. We are also looking into the possiblity of my taking a medical retirement from PERS which if it goes throgh will change our lives just a little, I have been the City Surveyor for North Las Vegas for a long time, it will be very strange not to have that "identity" Well, enough for now, I'll check in again (sooner than a year). We hope all of you are having great springs, and enjoying some wonderful warm weather, while praying for some moisture to help us out. Bart