Welcome to my CaringBridge website which was created it to keep friends and family updated about my journey with CLL. Get started by reading the introduction to this website, My Story.
Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.
I'm starting this web site to document what I hope will be a long and uneventful journal about my diagnosis of CLL–Chronic Lymphocytic Leukemia. However, knowing how these things can progress, I believe it will be easier to document as I go along rather than having to recreate the story at some point in the future when I am less inclined to remember the details.
Following a routine medical exam in March 2010, I got a call directly from my doctor (first sign something was not ok). She informed me that my blood counts were abnormally high and that rather than bring me back in for a second test, she was sending me for evaluation by a hematologist. She assured me that it was likely nothing to worry about but that she would get me an appointment scheduled. I did a little research and saw that hematology is the specialty of blood disorders.
So I heard back from her nurse that I had an appointment with Dr. J. Melear in two weeks. I wasn't too worried, as my doctor had assured me it was not a big deal. I got a reminder call from Dr. Melear's office and still there was no reference to the C word.
On the day of my appointment, I called Dr. Melear's office to get information about parking at or near the facility ... and that's when I found out that his office was in the Texas Oncology Midtown location. So now I'm a little more concerned about the diagnosis! They told me that as a new patient I should arrive about 45 minutes prior to my appointment to complete paperwork, etc.
Little did I expect the introduction I got to Texas Oncology. First it was simple paperwork. Then a lengthy meeting with a Social Worker followed by a meeting with the Accounting department. Remember that up to now no one had even said the C word to me.
Next I was taken to the lab to give blood samples and then wait to see Dr. Melear. In short order I was in Dr. Melear's office and he was talking with me about the likely prognosis of CLL. He assured me that CLL is often discovered in routine medical exams and that in many cases the disease only very slowly progresses over a number of years. In fact, he said that there is no cure for CLL and that some patients never need any medical treatment or at least not until much later in life. He explained that he would get the results in two weeks from that day's blood work and have me come back to confirm the diagnosis.
When I returned for the second visit with Dr. Melear, he confirmed the CLL diagnosis. We talked for a long time about the disease and how my blood counts were in relation to what would require aggressive treatment. Because there is no CLL cure, treating the disease in its early stages is not beneficial, practical or necessary. He said the plan would be to monitor my blood counts every three months to see how the disease is progressing and make decisions about care each visit.
Ironically, this follow up visit with Dr. Melear was on the day my chorus, Austin Harmony, was singing at the Central Texas Chapter of the American Cancer Society's Relay for Life event. How's that for a dose of reality? It was a serious jolt to observe both cancer survivors and those walking in memory of loved ones to raise money for cancer research.
My next visit to Dr. Melear was in early August where he confirmed that my counts were indeed going up, but not at a very high rate. We talked more about CLL, since by now I had done a lot of research about the disease, its stages and treatment. Still he confirmed that all we should do is wait and see how it goes. Next appointment early December.
Subsequent visits have seen my lymphocyte counts progress like this: 25K (normal is 5K or less), 38K, 45K, 58K, 70K, 88K, 123K.
At my March 23, 2012 visit, my lymphocyte counts were approaching 140K. Initially Dr. Melear had said we would likely need to start treatment when the counts were over 100K. At this visit he asked how I had been feeling and I had to admit that I tire more easily, often feeling worn out at the end of a routine day. Also, that I have always bruised easily but that now it seems the bruises are worse and last longer than before. Also, that when I overexert myself, it takes longer than it used to for me to recover.
So we agreed that it was time to start chemo therapy.
As of this time, the only folks who know about my CLL diagnosis are my husband and kids, my boss, my brothers and sisters and my chorus. I decided it was time to let others in on my situation, so the week of April 2, 2012 I started sharing the reality with others in my circle of co-workers and friends.
Started 2019 with a visit to my oncologist. Had been there in September2018 and my counts were up slightly. Today they were up again, so the CLL is definitely back and now it is a matter of waiting to see how quickly the counts rise this time. Last chemo was Nov16-Feb17, so two years ago. The dr had said to expect 2-3 years of remission, so he's right on target. Not that I WANTED him to be right, but it is what it is. I'm feeling fine...now will just wait three more months to see what that check up brings!