Come along and listen to...
I'm going on a journey and wanted to invite you to join me. I've never been down this road, but it is a trek many have taken before. I have no idea at this point in time how our trip will progress, or where it will take us, but I have high hopes that it will promise a bright future. A passport is not needed, even though some parts of the adventure may appear quite foreign.
For you see, I have Chronic Lymphocytic Leukemia (CLL). I've been told that because my spleen has grown -- normally the size of a fist and nestled peacefully under the left ribcage is now, what feels like to me, the size of a football and protrudes to my bellybutton causing my mid-section to resemble a watermelon -- that I need to be treated; and the treatment is chemo.
CLL is chronic, as the name implies, and I have had it since at least 2003, but I wasn't clinically diagnosed with CLL until I had a bone marrow biopsy in January 2006. The biopsy was something from medieval days -- it, unfortunately, has not progressed. The procedure involved removing a plug of tissue out of my backside down to the pelvic bone. Then the oncologist, without anesthesia, used a hand-held serrated implement, which he twists in order to bore into the pelvic bone and down into the marrow. It isn't pleasant feeling the pressure or hearing the sound of the bone crunching, but the worst part is the anticipation prior to the biopsy. Since 2006 I have been in relatively good health, except for a bought of pneumonia in 2009. But since my diagnosis, my spleen has been growing.
The spleen is part of the body's lymph system, which acts as a drainage network that defends the body against infection. The white blood cells produced in the spleen engulf bacteria, dead tissue, and foreign matter (which also don't need passports), removing them from the blood as it passes through the spleen. In addition, the spleen maintains healthy red blood cells (carrying oxygen), white blood cells (fighting infections), and platelets which help the blood clot. The primary function of the spleen is to filter the blood by removing abnormal blood cells. The good news is that my spleen has been doing a fantastic job. I'm very proud of it, and would live a shorter life without it; but I've grown quite attached to my spleen, so I'm going to do what I can to keep it and live a longer life.
My white blood cells are soaring around 109 and 122 K/mcl (the normal range is 4-10 K/mcl); my red blood cells are lingering around 4.44 and 4.57 M/mcl (the normal range is 4.63-6.08 M/mcl); and my platelets are floating around 79 and 115 K/mcl (the normal range is 160-400 K/mcl). While none of these would require that I start chemo, they are of concern and have been monitored on an ongoing basis. And then there are my lymph nodes, which have been fluctuating up and down for years now -- but some in my neck and groin have been enlarging as of late.
So, I need to begin treatments for my spleen, since it is considered a progressive bulky disease (spleen >6cm), which I'm told should take me back to a "normal" state in terms of my blood measures and lymph system. I will still have CLL at the end of the treatments since the only known cure at present is a bone marrow transplant which is not given at my stage of treatment. But I'll feel better, have more energy, and be happier for it. And I'd like to invite you to come along with me on this excursion while I share with you my experiences and feelings as time passes. I can't promise you that I'll be faithful and report on any type of schedule, but I can promise to be upfront and honest with you, and I'll hopefully make you laugh from time to time. That's what I'm planning on doing -- laughing out loud, often and ecstatically as the journey achieves its goal -- which could take between 4 and 8 months.
I have to admit that I'm looking forward to the chemo treatment, although I am somewhat afraid, which I would expect to be. Not afraid in the sense that there is something lurking in the dark, but from not knowing how I'll respond to the treatments. The specific chemo drugs that I will be given are fludarabine, cytoxan (cyclophosphamide) and rituxin (rituximab) which is known as a FCR Treatment Protocol. I've elected (agreed actually) to have this procedure due to my age (61) and physical well being (other than CLL). I'm told they are toxic, but that they are less so than in years past, so the concerning side effects are that my blood counts will get even lower which will make me even more susceptible to infections; I may have constipation, mouth ulcers and skin problems; and I may experience hair loss or thinning. But I have a good feeling that I'm going to be the exception to the rule and not get sick, lose my hair, etc.
Before my chemo treatments begin, I'm scheduled to be in a study, headed by Dr. Alexey V. Danilov, involving an organic chemical, vincristine (a vinca alkaloid), derived from the Madagascar periwinkle flower. The side-effects, as from other treatments, are numerous. I've always been willing to participate in clinical trials since I've known I have CLL; and when the opportunity arose I had second, selfish thoughts (see, I told you I'd be honest). Only up to 10 CLL patients who have never been treated with chemo will be participating in this study. It's odd how something like this didn't worry me before. If you agree to come with me on this discovery then you'll find out how my becoming a guinea pig worked out, and how my chemo progresses post participation in the study.
Timing: Study any day now and chemo beginning Aug. 12.
Oh, and Lebanon, N.H. is where I'm being treated, at Dartmouth-Hitchcock Medical Center, by Dr. Marc Gautier and Anna D Schaal, MS, ARNP -- two of my many angels here on earth.
Come along and listen to...
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