LOST OCT/DEC 07 - WAS IT THE CLL, DIABETES, HYPERTENSION, OLD AGE OR THE PREDNISONE?
Looking back I am only now beginning to realize how much my nice, comfortable, easy to deal with, lazily mundane life changed after Friday 12 Oct 07 when the Dr. looked at me and said “I’m putting you in the hospital on a directed admission, we’ll call an ambulance to have you taken from here.” After going back and forth with the Dr. I drove home and called my wife at work to tell her “I’m home from the Dr’s. and waiting for the hospital to call that they have a room for me.” She knew I’d had had a cyst removed from my back and the Dr. had called me in for the third time in two weeks because he didn’t like some of my blood work after my routine visit. The surprise was what he didn’t like about it - a 50,000 then 20,000 then 9,000 platelet count and today my feet and lower legs showing petechiae. Hence the hospital visit by which point my platelet count was down to 6,000 so I ended up with a transfusion of 2 units of platelets, the start of 70 mg Prednisone daily and a cat scan.
I was released Saturday afternoon with a platelet count of 235,000 and an appointment with the Hematologist/Oncologist for a bone marrow biopsy on Monday along with a feeling of absolute exhaustion. The reasoning behind the BMB was to rule out causes for the platelet lose and stick a diagnosis of ITP on it. Needless to say it was more than a little disturbing when on Halloween the Dr. told us the BMB showed I have CLL (chronic lymphocytic leukemia), Leukemia, Cancer. “The good news is this a cancer you may well die with rather than from.” (While much of my subsequent research showed this statement to be technically true what it also showed was more than 50% of people who died with CLL died from complications of the CLL due to greatly lowered immune systems.) Truth be told the only part of my research I did like, or tell my family was that it was possible with CLL to go years without showing symptoms or needing any treatments - This fit in with my attitude of the only difference between the minute before I was told and the minute after was putting a name on something the Dr. was telling me I have. Of course while the Cat scan and a PET scan (eyes to thighs) did not reveal anything totally out whack for a 6o year old, the blood work did not come back with quite as good a prognostic story, it’s unmutated, ZAP-70 >30% and CD38 +.
By this point it’s late November and the Prednisone dosage is down to 30mg a day, but I’m not feeling any more alert and I was only getting things done by forcing myself to do them. By the beginning of January the dosage is down to 7.5mg. and I was starting to feel somewhat alert again, but also realizing I seem to have “lost” those three months - and of course now I’m trying to at least figure out just what I did or didn’t do during that period.
Some things I do know and am sure of; like going to church every week and working with Ted and the video crew and the sound people. I know we did the Worship Summit because there were problems getting the satellite dish installed, in fact we only got it installed and a signal up with less then 2 minutes to spare thanks to a call to Ted at work in NYC. The summit was really good and we’ve even been working on incorporating some of the ideas we saw in our own program. I’m sure Army Dude was home for Thanksgiving, cause he arrived 6PM Thanksgiving day and we had to buy Chinese food the day before ( No Chinese restaurants open on Thanksgiving, and that’s what he asked for.) I think we bought enough to feed the whole army, Gram and Ted reheated it all while Mom and I picked the Dude up at LaGuadia Airport. And then we spent about half his leave time at church mounting the third projector in the ceiling of the sanctuary. I did not keep up drawing Ted’s comic, but he took over and has been doing quite well with it. When Ted put the comic on the Web Comic page he asked for a logo and gave me a sketch of what he’d like. I remember it seemed to take forever creating a font and glass of milk to look good and still fit the specified 80X80 pixels. Of course he then wanted a desk top and bowling shirts utilizing the logo - I dare say both came out well. Oh, yeah we joined a bowling league, bowl every other week with the Sayville United Methodist Church. Somehow I managed to bring in 2 new web sites for design and hosting- one extensive and the other real basic. December 1 Ted moved to Brooklyn, 3 wagon loads over 2 days, a nice apartment near the Verrazanno Bridge. We did a 3 camera shoot of the West Islip Winter Concert, with one of the young people from church as a cameraman/grip. We did a live edit DVD of the BCS Christmas Pageant. Army Dude was home again for Christmas and we had a home cooked Christmas Dinner (Prime Ribs) for the first time in years and that was really good. The rest of those 3 months is pretty much a blank - I know I moved my blog from within my website to here, it’s dated. I know I went for blood work every week, I have copies of the results. I know I paid the bills, but it seems never on time cause I was always getting calls from them wanting their money . I know I was working on a number of things regarding affiliates with and for our web sites - but I still haven’t figured out quite what, I have go through a bunch of notes I can hardly read and the tutorials I bookmarked in my browser to reacquaint myself with where I may have been heading.
By Mid January I knew I was playing catch up with myself and my life and thought a good way to start trying to figure out what had and was happening would be to start setting it down here where; first and most important to me is I should not be able to lose it and secondly maybe someday someone already having been there saying “you’re not alone” or someone else finding themselves where I was just short months ago would discover they are not alone. A result of my second new posting was an invitation;
I too am a CLLer. Currently undergoing my second treatment FCR. …..Sure would like to see you join us at CLL Christian Friends if you are in a mind to. I am an Admin there and we have a great support site. …… Take care and God Bless, Loren aka BaldEagle
By 1 Feb 08 I had visited the site several times and realized it was time to commit and join this family of Christians brought together by CLL to care for and about one another through prayer and understanding, being there for one another especially through the hard times, but also each sharing and truly applauding the triumphs of each other. The shear warmth and sincerity of welcome was exhilarating and I dare say somewhat daunting, especially as I as yet have no obvious symptoms other than being so easily tired and that both my sons say is because “you’re old!” I was speedily put at ease by these wonderful people who all reminded no matter how I may feel now, the simple fact is I have CLL and while they wish my status will remain as it forever the fact is it could change at any moment. As for now I thank GOD that life is good.