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.