I am Stage 4 CLL

If you are reading this blog, you or someone you love has CLL, I feel your pain. I currently have stage 4 CLL with the complication of having Hepatitis C. I like many others search the internet almost daily to find out how others are doing, and what I can reasonable expect from this disease. I was diagnosed 6 months ago and was stage 3/4 from the get go. (My platelet level was 119 just a hair below normal, within three months it had dropped to 74 well within the criteria to move me to stage 4)

In my first post I mentioned I had pneumonia in March of this year and that led to me finding out I had leukemia, what I didn't tell you was that I also had pneumonia in November of last year and my platelets at that time were only 96, so in all likelihood I have been stage 4 the whole time. So what is my life like? How sick am I? What meds am I on? Those were the questions I wanted answers to when I was first diagnosed, and as I said earlier I scoured the internet looking for answers. You have to peel back a lot of advertising to get some ideas, but the truth is all of us are different and our response to this disease is different.

Currently my doctor wants to treat me, he told me that two months ago. I respectfully declined, let me tell you why. The only tangible effect that CLL is having on my body that I am currently aware of is slight discomfort in my abdomen from my swollen spleen and I am bruising easily. The fact is I have been bruising easily for the last several years. (3 -5 years) I wondered about the bruising and searched, my searches turned up the possibility of cll, which I dismissed out of hand, and age related bruising. (I turned 60 in February). That's it, that's all I have going on. No night sweats, no fatigue, no weight loss, no loss of appetite. I work out, I play golf, I am in fairly decent shape (slightly overweight). It is possible I have been stage 4 for several years already. So I am not in a rush to be treated. I haven't ruled that out, it may come to that, but I am like many others I am hoping otherwise.

BTW I have no dietary secrets, no vitamin super juice to try and sell you on. I have been trying to eat more healthy, but I do like my donuts in the morning. The only thing in my life that has really changed is that every day my wife and I have communion and pray together. I remember reading a regret an atheist once posted, "the only thing I regret is that you Christians have someone to forgive your sins." That is not all we have, we also have an anchor in the storm.

40+ years ago I shared a needle with someone, I did it only once, and as a result I got Hepatitis B&C. I have never been sick from the hep, but if they need to treat my CLL, the drugs that treat CLL would quite possible allow the hep to explode in my body and perhaps kill me. Yesterday I began treatment for the Hep C, my body has developed antibodies for the Hep B so that is no longer an issue. One of the drugs I am taking (ribavirin) can cause anemia, which would be catastrophic for me. So tonight like we have done so many other nights my wife and I will the end the day in our bed, taking communion together and praying for protection and healing.  Right now I consider myself a walking miracle, and though I am not sure all the twists and turns the road ahead has for me, I am grateful that a long time ago I put my life into His hands.

I hope hearing that I am stage 4 and exhibiting so few symptoms brings you a small level of comfort. BTW I have not had so much as a sniffle since the pneumonia in March. Wishing and praying the best for you - Maurice