Tuesday, October 06, 2009

Light The Night Walk - Austin - October 24, 2009

I am such a procrastinator!  For years I was going to join Procrastinators Anonymous, but I kept putting it off.  Finally got around to finding out where the meetings are but I haven't been because they keep postponing them.  I think the last meeting was about ten years ago.

It is almost time for the annual Leukemia and Lymphoma Society's Light the Night fundraiser.  This will be my fifth year to raise funds and participate.  But, it is less than three weeks away and I haven't raised a penny yet.  It is not like I didn't know about it because I am on one of the committees.  How sad is that?  I even participated in the kickoff in July and was on a discussion group to give tips on fundraising.  Even sadder, huh?  I think I might have told them to start early...sigh.

So how do I try to redeem myself?  Well, tomorrow I am sending out emails to all my family and friends begging, er, asking for support.  I am also posting here and asking anyone who isn't already supporting someone in their effort to support me.  It is really easy to do online using a credit card and you will get an instant receipt for tax purposes.  Just go to my page: http://pages.lightthenight.org/ctx/AustinL09/jtw890 then look over to the right where it says "Make a Donation" and follow the directions after selecting an amount and pushing the red "Donate Now" button.  If you will be seeing me in person, I can take a check made out to the Leukemia and Lymphoma Society, or you can mail it to my home address.  I know these are horrible financial times and there are all kinds of worthy efforts, but if you could possibly support me with even a small donation I would be grateful.  The five, ten, and twenty dollar donations do add up.  If you can't afford that, I do understand and would appreciate your prayer support if you are so inclined.

So why do I do this?  This will be my fifth year doing the walk because I believe the LLS does some good work.  They give lots of money to research and were a huge contributor to the research that led to the new Gleevec drug which has been a life saver for people with CML (another type of leukemia).  They also do a lot for patient education and give some financial assistance to patients also.  I have benefitted in several ways from the work they do.  Too many children and adults die every year from blood cancers and I want to have a small part in trying to find a cure.
  • A donation of $25 provides patients and their loved ones with FREE booklets that contain up-to-date information on their disease and help them make informed decisions about their treatment options.
  • A donation of $50 makes possible a Family Support group with a trained facilitator where comfort can be found and experiences can be shared among patients and family members.
  • A donation of $100 helps supply laboratory researchers with supplies and materials critical to carrying out their search for cures.
  • A donation of $1,000 makes possible one- on-one conversations with health care specialists who provide patients with information about their disease, treatment options, and helps prepare them with questions for their health care team
The walk will be October 24 by the grounds of the Dell Children's Medical Center at the old Robert Mueller airport in Austin.  If anyone would like to join me on the walk, you are welcome to come, just let me know.

In the meantime, visit my fundraising page,
and read a little bit more information about me and the walk, and if possible, make a donation.  Thanks! 

Last year on the walk.
 Red balloons are supporters, white balloons are for survivors and gold balloons are in memory of a loved one:

Team Wagner:

The starting line:

Strange Disease

It is the middle of the night, but yesterday was my IVIg day and the steroids never let me sleep.  I thought I better post to my blog before some folks get upset with me again.  It has been a difficult couple of weeks.  I last wrote about the stomach virus and it seemed like it was almost gone when I posted.  But it wasn't.  It kept making a comeback.  By Saturday I thought it was finally over and then Sunday morning about 1:30 a.m. it made a huge comeback.  During the night I felt worse and worse.  And I started running fever along with the stomach stuff.  I was scheduled to give the prayer before the morning sermon in church that morning and I also teach a class.  I knew I was in no shape to go but I was also upset because it was too late to get a substitute who would have time to study for the class.  I waited until a respectable hour to call the pastor to tell him I would not be praying in the worship service.  He said that was no problem and he would get someone else to fill in.  I knew that could be taken care of easily with just a little bit of notice. 
My class was also well taken care of.  Fortunately I do not teach my class by lecture.  We learn by discussing the lesson and the class is great with discussion.  The two books I use were already marked up with underlining and notes in the margin and questions to ask, so I gave Cheryl the books and asked her to get one of the capable members to lead the group.  Well, three people stepped up to the plate.  My daughter served as moderator to begin with for opening announcements and sharing time of blessings and prayer requests.  While that was going on, two of the guys, Joe and Cliff prepared by skimming the books.  Cheryl said it all went very well.

By afternoon my fever was about 102.  However, ever since the CLL/SLL diagnosis, my regular temp is in the low to mid 97 range, so it was really a higher fever equivalent to over 103.  I felt rotten and I was coughing too. 

That night the high fever broke and I decided I needed to keep the appointment the next morning with my oncologist and I knew I could wear a mask in to protect the other patients.  (They also have a sign posted asking for anyone with flu symptoms to wear a mask.)  The exam went well until he was listening to my chest and he didn't like what he heard.  Since I am so prone to pneumonia and have had it three or four times since the cancer diagnosis and twice when I had no symptoms including no coughing and it only showed up on "routine" CT Scans, he sent me right over for a chest x-ray and told me to bring the films back to him.  When I got back he and his PA assistant looked over the films and decided I had something cooking in my lungs.  He pointed out the light areas to me indicating fluid.  So he gave me a prescription for antibiotics.

It is a week later and I still have a slight cough, but it is much, much better.  With the excitement of the chest X-rays, I had forgotten to get my blood test results, so I got them today when I had my IVIg infusion.  I knew they had been good lately, but I was shocked when I looked across the columns and saw that there has basically been NO CHANGE, neither in my white count nor in the absolute lymphocyte count since last March!  After the rapid increases of late last year and early this year, the brakes were applied!  Thank you, Lord.  Even my platelets which had plummeted last month came back up to 120.  My IgG level had only dropped into the 600's also.  Still low enough for the infusion (under 700), but not real low.  The one thing I wish I had thought to ask and didn't was, "why wasn't the white count way up last Monday when I was in the middle of the lung infection?"  Normally when you have an infection your white count rises.  Is it because of the damaged immune system that I don't mount a normal defense?  I know some other CLL patients have had a jump in white count when they have been fighting infections, so I really don't know.  However, as Dr. Wierda at MD Anderson has remarked several times, "I don't follow the norm at all."   That could be a good thing to be abnormal, couldn't it?  Stupid cancer, stupid disease.

I told Cheryl tonight that I sure wish I felt as good as my blood counts looked, but that is probably from fighting the stomach virus and pneumonia.

Now I have to go write another entry (I have several I have written in my mind - wish you were all mind readers as it would save me a bunch of time!)