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