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.