11/26/08 - Thanksgiving

It has been a while since my last post, and quite a bit has happened. First off, I want to let everyone know how my Dad, Paul, is doing. As you may remember, he went in for some abdominal surgery on September 11^th, and as of today he is still not home. The details of his ordeal would make for an interesting article in a medical journal. The good news is that as of yesterday, he has been moved to a rehab facility and his next move should be home. We have all learned that it is not wise to give estimates on when things might happen because something always seems to get in the way. We are hopeful that he will be home for Christmas.

Yesterday I had my standard monthly IVIG infusion and I also had an appointment with Dr. Kipps to go over the results of my bone marrow biopsy. The short report is that all my blood numbers look good, my lymph glands are the same as they were in September, my spleen is only slightly enlarged, however the bone marrow does show some evidence (12%) of CLL cells. It was decided to watch my numbers closely for the next month and see if there are any changes. If there are no changes we will just watch and wait. If there are changes, then we will have to look at another round of treatment. The good news is that I feel great, even walked 18 holes of golf last week. So, we will just continue to wait. End of Short Report.

The best news I could have gotten was that there was less than 3% involvement in the bone marrow. That is considered a Complete Response (CR). At my first bone marrow biopsy in 2007 I was at 80% involvement, so at 12% that is really quite an improvement and is considered a Partial Response (PR). Once again I have become a medical quandary. What do you do if you still have a 12% involvement? Do we treat now? If so, with what? We all agreed that we should give it a month or two and see what my numbers do. If they remain stable, then we should wait for a longer period of time, if they change, we should look at an additional treatment. He was a little concerned about the drop in hemoglobin from 15.4 to 13.9. He wants to watch that closely (a blood test in two weeks) to make sure we have the Autoimmune Hemolytic Anemia still under control. He thinks it is under control because of some other blood test numbers, but doesn't want to take any chances (what a refreshing approach). All of my other blood work is within normal ranges. White count 8,100, Platelets 165. My lymph glands are the same size they were at the September appointment and he once again indicated that this might be the size that I now have to live with (they are much smaller than before the treatment). When we cornered him about what a NEXT treatment might be, he basically told us, let's cross that bridge when we come to it, but also indicated that there are several different options that would be available to me.

I also received a flu shot, although he commented that studies have shown that flu shots may not benefit someone that has a compromised immune system. He said it is better to have those people around you get the shots, so they don't get it and pass it to me. He also indicated that unfortunately the most contagious time for a person who is getting the flu, is right in the beginning when they are still walking around, going to work, etc. So they don't even know it until it is too late. He said that the IVIG (IV Immunoglobulin antibodies) I am getting is probably the best protection from the flu.

As we were leaving another patient of Dr. Kipps passed us and after he walked by us, Dr. Kipps told us that he was in his 7^th year of a Complete Remission. So, we know that I can be put into that state for a long period of time, it is just finding the right treatments to achieve that goal. I feel great, playing golf, traveling back and forth to Seattle and spending time with our friends and family.

This Thanksgiving we will have all four of our children with us for the first time is I am not sure how long. Matt from Seattle and Aimee from Orlando made the trip out this year. It may be our last family get together this year, because it looks like they will both be stuck at their homes during Christmas. Last year at this time I was in pretty bad shape and this year I really do have a lot to be thankful for. I thank God for being on the road to a Complete Remission, having a great family and great friends. I also know that my Dad will be home soon and back to dancing.

HAPPY THANKSGIVING

Terry

 

10/31/08 – Never a Dull Moment

Well, there has been a lot going on with the 'Evans Clan' in the last month, and most of it has nothing to do with me. As some of you know, my Dad went in for abdominal surgery on September 11^th (maybe that should have been the clue). Unfortunately the 5-7 day hospital stay has turned into over 7 weeks. I won't bore all of you with the many issues, but suffice to say, just about whatever could go wrong, did. Some of the details were; wounds not healing, leaks in the intestine, drains having to be surgically inserted, clots in the lung and leg, having to be intubated and placed on a breathing machine, and having a tracheostomy put in. So, after 4 weeks on a surgical floor, then 3 weeks in ICU, today he has finally moved to an Acute Care facility. It is kind of a rehabilitation facility for people that still have some major medical issues. The goal is to wean him off of the tracheostomy and get some of his strength back. The estimate is that he will be there 2-4 weeks and then he should be able to come home. You can imagine how weak you would be if you had to spend 7 weeks lying in a hospital bed. I know that he is going to get through this as I have never seen a more determined individual, and he knows that it is going to be a long road, but we are finally starting to see a light at the end of the tunnel. He has a great support system, and the fact that my sister and her partner, Cherese, live up there has made this much easier to manage. My dad's wife Lois, has been a real trooper through all of this. Donna and I have made two trips up there so far, and we are going back up next week for a week. At various times, all of our four kids (Matt doesn't really count since he now lives up there) made the trip to Seattle during this ordeal, and were all able to visit my Dad when he was alert.

All of my issues right now seem to be minor compared to what has been going on with my Dad, but I have had some things happen. On Wednesday, the 29^th, I went down to La Jolla for my monthly IVIG (immunoglobulin) infusion, and of course they did the standard 8 vile blood test. I got most of the results back that day and my numbers are interesting. My white count is down to 2.9 from 6.9 (normal is 4-10), so now I am a little under normal, the first time that has ever happened, but not that uncommon. My hemoglobin has climbed up to 14.7 which is well in normal range, and a sign that my autoimmune anemia is on the run. My platelets are well in the normal range, but there are a couple of numbers that are not so good. My Absolute Neutrophil Count (a portion of what makes up the white count) is low, and my Absolute Lymphocyte count is high, which probably means that there is still CLL activity in the bone marrow. Now none of this has been evaluated by the doctor, so I am partially speculating here. On November 12^th I will be having another bone marrow biopsy which will be able to accurately tell what the activity is in the bone marrow. However, I won't get the results of that until two weeks later. I am also guessing that I will need another round of treatment (of a different kind). After talking to my case manager on Wednesday, she indicated that there is no immediate rush for any of this and an additional treatment could wait until after the first of the year.

Another item of interest is that I have been noticing that my right eye vision has become somewhat cloudy over the last several months. Today I went to the eye doctor and she confirmed that I have a cataract in my right eye, and will probably have to have cataract surgery in the future. It is not enough to make me not be able to see (I still have one good eye), but it is just a little blurry if I close my good eye. It is more than likely that the steroids that I have been taking accelerated the creation of the cataract that was slightly there last August. So just another wonderful side effect.

Did anyone catch the wretchedly bad misspelling (on purpose, but I thought it funny).

Terry