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