It's not always the CLL

Since my last post in November A LOT has gone on.  Fortunately not much of it has to do with my CLL.  As of right now I have been on my trial drug Imbruvica for 2 1/2 years.  In that time I have almost progressed to normal blood levels and lack of any other B-symptoms like swollen nodes, night sweats, fatigue, etc.  With one notable exception which I will talk about below. 

Otto Remington

So what has happened in the last 4 months?  Quite a bit.  Most importantly. our 5th grand baby was born to our youngest daughter Sarah and her husband Kevin.  After a long and trying pregnancy, Otto Remington was born in February and we were fortunate enough to be in Montana for his birth.  He is doing great and growing by leaps and bounds.  So far our oldest daughter has gone to visit her, and our two sons and their families are going in the next 2-3 weeks to visit them.

Secondly, I have become more and more involved in the CLL Society a non-profit devoted to the education and support of the CLL patients.  I am already facilitating the Orange County group at University of California Irvine Medical Center every month and we have been fortunate to branch out and form another support group based at the City of Hope in Duarte.  I will lead the group for a few months and then turn the reins over to another individual that has been involved in other support groups and is willing to lead this one.  Our mission is to expand these types of support groups all over the U.S.  We already have interest from about 5 locations that are interested in having this resource in their communities.  This seems to be a role that suits me, and it is definitely rewarding sharing with fellow CLL patients.

Lastly, I have been having abdominal issues for a number of years, but it was undiagnosed all this time.  This changed 2 weeks ago.  I had been having issues for about 8 straight weeks starting in January, and it didn't seem to be going away.  After visit to a gastroenterologist, and a nuclear scan, they determined that my gall bladder was hardly functioning at all.  So a visit to the surgeon on Tuesday, surgery on Friday, I am now without a gall bladder.  I was in by 5:45 and out by 2:00 pm, not bad.  So far the recovery has been fairly easy, but I have been on a bland, non-spicy food menu (not what I'm used to), so I really haven't tested it much.  Because of the trial drug, there is a risk of bleeding, so I had to be off of it for 7 days and can't restart for 2-3 days post surgery.  I stopped the medicine as soon as I got the results from the nuclear scan, so that I could have the surgery as soon as 7 days were up.  This meant I would have to have the surgery on Friday.  I knew this was going to be a stretch because I didn't even see the surgeon until Tuesday of that week.  This became even more of an issue because after 4 days of being off of Imbruvica I began to relapse.  My lymph nodes grew in size, came back in places I had never had them before, and we painful to the touch.  Even though all the reports say you go back into remission quickly after you restart the drug after surgery, I knew I wanted the time off the drug to be as short as possible.  I really want to thank the staff for understanding my plight and doing their best to accommodate me. This was my first experience with Hoag Hospital in Newport Beach, and I can say that I have been thoroughly impressed with the staff and facilities.  I have an appointment at UCSD on Friday so I can see what effect this has had on my CLL. 

On another note.  I get comments on my blog, and unfortunately, when someone posts a comment, I can't see where it came from.  There is no email attached, so I can't respond.  If some of you thought I was being rude for not responding, I apologize.  I just don't know how to get a hold of you.  Because the comments are public, I would hesitate to put your email in the post, but you can contact me directly at tevans@cllsociety.org  and that will get to me. 

So I guess the takeaway from all of this is that I can't blame everything on my CLL.  I still will have other medical challenges along the way, but after doing this so long, not much phases me anymore.