March 21st – They managed to arrange CT Scans for Scott yesterday. Results were posted on MyChart last night but not read by the doctors until today. The lesions found on his hips are also in other places. His lymph nodes are clear so far and his organs are also in good shape. His spleen is enlarged and that is new information. That might explain the drastic weight loss and lack of appetite.
Not having the patience to wait until tomorrow, I found myself up until the wee hours of the morning with my new best friend Google. Knowing that I shouldn’t believe everything I read, I am cautiously optimistic that I have found the answer. In my quest for information, I googled Essential Thrombosis + enlarged spleen and got “Myelofibrosis”. Further searches on that topic, seem to make me feel like I have found what we have been looking for – he has all the symptoms of this condition. Although it indicates it’s very rare, only 18,000 people have it in the U. S.; it is a fairly common transition from Essential Thrombocythemia or (ET).
We hear from Dr “O” about 1 p.m. the next day and as I anxiously await his announcement that we have found the problem, I hear him saying that he has consulted several of his colleagues and they are all baffled by the situation. My head was swimming as I hear these words. Baffled – and you are a licensed oncologist/hematologist with how much invested into your education and you have been my husband’s doctor for ten years and you are baffled. I have zero medical background but it took me about 30 minutes to narrow my search down to the perfect explanation. Now what do I do???
The next day, our family doctor called to see if we knew anything new. I confided in him my findings. He encouraged me to call Dr. O again and let him know that I had found something of interest. He reasoned that I would know best what all his symptoms were and that he often finds that partners and mothers were very intuitive when it came to medical issues.
I called Dr. O’s office and talked to the nurse. She said that since we were going to Mayo before the Doctor got back from vacation that I should just discuss my concerns with them when we got there. O.k. then……WILL DO! Can’t wait to see what they say.