I don't Know What Stage Leukemia You are!

I don't Know What Stage Leukemia You are!

Imagine hearing that from your hematologist, well that is exactly what he told me. March of '15 I found out I had leukemia. Put on watch and wait. Saw my doctor again in July, I'm told I am stage 4 and he wants to start chemo. I respectfully declined, I just didn't believe I was sick enough to need treatment. He acquiesced to my decision and set an appointment for 2 months later (Sep '15).

I went and saw him last week, and on the way to his office, I was rolling over in mind the arguments I could use to avoid treatment, I still am not very sick in my opinion. I have a fairly enlarged spleen and some lymph nodes, I also have a low (75) platelet count. Bruising, and slight abdominal pressure are my only symptoms. No fatigue, no sweats, no anemia. They took my blood, doctor came in and his first words were, "we don't need to treat you at this time." I still have an enlarged spleen and platelets remained at the same low level. WBC is at 33k slightly up from my last cbc. So I asked, because I didn't have my cbc results in hand or even know what they were, "Am I still stage 4?" That's when he dropped the I don't know what stage you are bomb. 

I have underlying Hep C infection, and Hep C can cause low platelets and an enlarged spleen. From my reading that is usually the case for people who already have cirrhosis, which I don't. But for now the doctor really can't say what is causing what, and since my numbers haven't changed, and I am having no other symptoms, no treatment for now, yeah! (In fact every time he checks my neck for swollen lymph nodes and finds none he seems to be very surprised.) Plus, I have noticed my spleen has gone down some, (less pressure on my abdomen).

I am being treated for the hep C, I have another 10 weeks to go. He says he will probably wait till that is over before any other decisions are made. My journey continues, my wife and I continue to take communion every day, and pray for my miracle. No magic diet, no oils that are way overpriced, no vitamins. Prayer, and communion, it's working for me. If you are reading this you or someone you love need a miracle, my heart goes out to you, whatever treatments you decide, add prayer to the mix, I believe it makes a difference.

Blessings!

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

Say What?!!!!

In mid-January of 2015 I felt a lump in the left side of my abdomen. I wasn't sick, I felt no pain, but was surprised enough by it to show it to my wife. Did some research and couldn't figure out what it was, but thought it might be my spleen. 8 weeks later I was at urgent care with pneumonia. In the course of treating that I mentioned the lump and told the doctor I thought it might be my spleen. She didn't think so, stating that the spleen was more towards the back than the front of the abdomen. A cat scan and blood tests were ordered. A few weeks later I was in an Oncologists office and I asked him, "am I here for you to check and find out if I have CLL?" His response was, "I don't need to check, I know you have CLL."

I was in a state of shock. I was shocked when I went to his office and realized it was dedicated to oncology (cancer), what was I doing here? I don't have cancer do I? And shocked to being told I had chronic lymphatic leukemia (cll for short). I guess I was expecting that for something like blood cancer there would be warning signs, or more obvious indicators. I did have an enlarged spleen by rationalized that away thinking my body was fighting some sort of infection. I wasn't prepared to hear that diagnosis.

What is going to happen to me? Can you treat this? Am I going to die,  I didn't ask all those questions of the doctor, like I said I was in shock. He said for now they would only need to watch me, and check me every three months, if all went well that would change to once a year. That was a little reassuring, but things still needed to sink in.

The next day the reality of what was going on really began to hit me and for the first time in my life I faced my own mortality. In prayer I told God, I didn't want to die, I didn't want to have my wife and children suffer. I broke down and wept, something that for me is a very rare occurrence. Then something wonderful happened. I am a Christian and a pastor, I have something I read called a devotional. (Actually I have several) For those who read this and may not know, a devotional is short bible passage with some accompanying comments. One of the ones I read was written over a hundred years ago by a man named Charles Spurgeon, called "Faith's Checkbook." I decided in my despair it would be good to read something which has encouraged me many other times. Before reading, this was my prayer: "God you know how desperate I am right now. I am going to read my devotional, and I know that it was written more than 100 years ago, but time is nothing to you. I want to pray that you reached across time, knowing where I would be and what I would be facing, and that You inspired Charles Spurgeon to write something that would speak directly to me today." The date of that prayer was March 26th. Here is the scripture verse for that day's devotional: (In the original it is the King James Version) Psalms 41:3 The LORD will strengthen him upon the bed of languishing: thou wilt make all his bed in his sickness. Here is that same verse in a bible version called the Message which is a more modern paraphrase: Psalms 41:3 Whenever we’re sick and in bed, GOD becomes our nurse, nurses us back to health.

Can you say wow!

You may not believe in God, but even the most hardened skeptic has to admit that is a very uncanny set of circumstances. My journey with leukemia is not over, in some ways I am a walking miracle and in some ways there are dark clouds on the horizon. (More on that in my next post) That passage in Psalms is for me an anchor of hope, I believe it can be one for you also. For those of you who have stumbled on this blog desperate for information and hope I want to suggest that along with reading everything you can on leukemia, you also read the one book that offers hope, and I recommend the book of Psalms as especially helpful in times of trouble.

I want to say that this diagnosis has had some very good effects on my family. My children (5) have rallied around me and expressed their love in ways and in depths of meaning that I could have never imagined. My wife and I are drawing closer than we ever have in our 32 years of marriage. Trials have a way of bringing out the best in people or the worst. For me and my family it has brought out the best, and for that I am very grateful. I have read the blogs of others whose family has all but forsaken them and left them to fend for themselves. My heart goes out to them. I close this blog with a passage from the Psalms for those who don't have the wonderful support that I have: Psalms 27:10 For my father and my mother have forsaken me, But the LORD will take me up.

In my next post I will tell you about my hepatitis C, and my overall good health while being stage 4 cll and on no treatment. Blessings for those on this same road I travel. - Maurice