The journey to my current diagnosis traces back to July of 2017 when the first abnormal blood test appeared at a routine visit to my primary care physician (PCP). He takes a very hands-on approach, being very detail-oriented while managing my health (I have Type 2 Diabetes). He was concerned when he saw my Red Blood Cell (RBC) and Hemoglobin (HGB) counts lower than the expected reference range.
During our discussion, the first thought was to look for internal bleeding so I was off to visit my Gastroenterologist for a Colonoscopy. Finding no bleeding, it was time to check the other direction and I was scheduled for an Endoscopy which came back negative as well.
More blood work and a new doctor later and I was in the office of a Rheumatologist as the working diagnostic theory was I had Lupus. As I met with the doctor, she looked at me and asked "why are you here?" This determined my next step and I headed back to visit with my PCP about my options. During discussions over many months, we determined I had no internal bleeding and there was no autoimmune disease causing my anemia (low RBC and HGB).
The first visit to an Oncologist office is an unnerving and sobering experience
I felt fine! I had good energy, very active outside of work, and had no issues staying focused at my very stressful job. There was only one last doctor to visit, the one of last resort, the Hematologist/Oncologist. Mild terror. God has this I tell myself.
The first visit to an Oncologist office is an unnerving and sobering experience. A waiting room filled with people of similar age to me with no outward appearance of Cancer. Others adorned with doo rags telling another story, they were fighting cancer. More blood work and another visit to discuss the results.
Down the hall to the last room on the right. On the other side of my exam
room wall was the place everyone with a possible Cancer diagnosis fears, the infusion room. My stomach tightened. Dr. Reddy entered the exam room. An archetypical Oncologist, Dr. Reddy is business like and detached, not in an uncaring way, but properly detached from the raw emotions present when a new patient comes to hear their diagnosis.
My anticipation increased as Dr. Reddy began his review of the latest results of my blood work as my blood pressure rose. He gets to his conclusions and tells me I have a pre-cancerous condition called Monoclonal Gammopathy of Undertermined Significance (MGUS), calmness envelopes me. He explained that there is nothing for us to do but watch and wait to see if the results of future blood work worsens. He expected us to have a long and boring relationship. So much for meeting expectations.
MGUS is a condition in which an abnormal protein known as monoclonal protein or M protein is in your blood. First identified by Dr. Robert Kyle of the Mayo Clinic, he coined the term after hearing of a patient who developed Multiple Myeloma 19 years after being diagnosed with Benign Monoclonal Gammopath. From the Mayo Clinic discovery website:
In 1978, Dr. Kyle described monoclonal gammopathy of undetermined significance (MGUS). Monoclonal refers to proteins produced from one clone of plasma cells in the bone marrow. A gammopathy is a disorder in the production of proteins (antibodies), in this case M (monoclonal) proteins. The undetermined significance means that there is no way to tell which cases will progress to multiple myeloma or another dysproteinemia, such Waldenstrom's macroglobulinemia, primary amyloidosis, B-cell lymphoma or chronic lymphocytic leukemia.
Later in 2019, my wife Julie and I met Dr. Reddy at his office to discuss the results of my latest blood work. It was suggested that Julie accompany me so both of us would hear the same thing. Even though I knew God had this and I was totally in his care, the fear of the unknown has a way of getting the best of everyone. We approached the hospital with great trepidation and entered his office for what I expected would not be good news. He was quick to dispense with the banter and got down to the business of telling me his diagnosis.
Smoldering Multiple Myeloma. Smoldering Multiple Myeloma is the next stage progression to what is known as active Multiple Myeloma. Again, I had no outward symptoms and felt just fine. My blood work said something different. It is peculiar how the result of a test affects your mind and body. You begin to question every body pain or abnormality that would usually go unnoticed...
On the drive home, Julie asked me how I felt after the diagnosis. Julie is a Breast Cancer survivor for over 15 years and knows the range of emotions one feels after meeting your oncologist for a diagnosis. I paused to assess my new normal before stating that I know God will see me through this fight wherever it may take us. I trust in Him for strength and wisdom. But, it was now time to do my own research at the oracle of all wisdom, Google.
Most physicians, especially oncologists will suggest that patients NOT perform research on the Internet as you will find information that may or may not map to your specific diagnosis/prognosis. I am the type who wants to understand what to expect from an incurable disease and how long this 58 year old man would be on this earth.
My suggestion? Avoid the Internet and ask your doctor for resources about your specific diagnosis. Be direct with your questions about life expectancy and how this will affect your life. Dr. Reddy's go forward plan for me, wait until your blood work worsens and come back in 4 months. How long before I progress to active Myeloma? It could be never, it could be this year. I do not wait well.