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6/23/2017 Latest post:
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On June 20, 2017, I was diagnosed with Acute Lymphoblastic Leukemia (ALL).
This journey started about 6 months ago with a fatigue that I just couldn't explain or understand. In addition, I started having "episodes" where I would get dizzy after standing, vision would go black, tingling in my cheeks and hands, weakness in my legs, and a feeling that I would pass out at any minute ... ending with a really bad headache. We didn't really take any of these things seriously for a while (several months) ... but, everything was getting worse and we decided it was time to look into what was going on.
Around the same time (Dec 2017), a routine blood test with my primary care physician (Dr. Masood) showed that my white blood cell count was low. We talked about it but, again, didn't take it very seriously. Then, follow-up blood test at the end of February identified a critically low level related to my white blood cells. One of my doctors (Dr. Zimmer) was adamant that I needed to see a hematologist immediately. He discussed the possible scenarios and he shared his research experience on the subject. That made me realize that I needed to move quickly on this; so, I scheduled that appointment (Dr. Thompson) for mid March.
At the same time, Dr. Masood also ordered and MRI/MRA due to the headache associated with my "episodes". All was fine, brain in place and no problems (yippee).
On 3/17/2017, I met with my hematologist, Dr. Thompson. She ordered lots of blood tests, but wasn't very concerned because I was not having any infections, not running a fever, spleen was fine, and no enlarged lymph nodes. So, even though my numbers were down from the end of February, we decided to take a "wait-and-see" approach. I didn't really push for more aggressive testing, probably because I just wasn't ready to face a bad diagnosis ... even though Dr. Zimmer and I had a very intense discussion about the likely outcomes. In hindsight, should I have pushed? Can't think about that now ... shoulda, woulda, coulda ... we did what we did and here we are.
On 6/6/17, I had more blood tests and Dr Thompson was surprised to see that my numbers were continuing to go down. Based on the hemoglobin number, she thought an iron anemia might be the issue so ordered more blood tests before I left the office. Within a couple of days, she called to say we need to move forward with the Bone Marrow Biopsy. These additional blood tests included a test specifically for Leukemia and it came back likely for ALL. So, I started researching.
There were several websites that provided really good information: American Cancer Society, Leukemia & Lymphoma Society, and Mayo Clinic.
The Bone Marrow Biopsy was performed on Friday, 6/16/2017. By early afternoon on Tuesday 6/20/2017, Dr. Thompson called to confirm the initial diagnosis of Acute Lymphoblastic Leukemia (ALL) and suggested that I get to the hospital as soon as possible.