Diagnosis Story

BEGINNING January 28, I will post updates in more a blog manner so the latest will be at the top when you visit the site. Those wanting to know how Cindy's AML journey began can click here. If you opt to follow Cindy's Village, you may also get updates via email or text.  Not yet sure how that works.

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Monday, 1/21/2019 - Cindy's annual physical with her Primary Care Doctor, Dr. Seth Mindell.  She confessed she was battling a low grade fever since Wednesday, 1/16 and feeling unusually lethargic, suspecting flu. After a routine exam and blood work taken for labs, Dr. Mindell sent her home and said that her feeling unwell was likely due to a viral infection and she would need to power through.

Tuesday, 1/22/2019 - Dr. Mindell called about 8:30 and said that her blood work came back and it didn't look good. Her blood was showing extremely abnormal counts: very high White Blood Count (WBC), low Hemoglobin (oxygen-delivering friends), low Platelets (clotting agent), and high Potassium; among other indicators — all bad. He was very concerned, warning that signs pointed to a form of Leukemia. He urged her to contact her cancer doctor, Doctor Jaiyesimi ("Doctor J"), immediately and go see him. She called me at work and I rushed home.  Then she received a call from Doctor J shortly after and told her to come in immediately, no appointment necessary as her case was considered an emergency. We arrived at Beaumont around 10 and got in to see Dr. J. at 11.

Dr. J. was very concerned, asked her lots of questions about her health, looked her over thoroughly, was amazed to not see any bruising on her body and that she appeared in general good health.  He explained that her blood counts would indicate a poorer state of health so maybe we caught this much earlier than would normally be the case.  Nevertheless, he made a bunch of calls in our presence to pull some strings to find her a room ASAP leading to Cindy being admitted and settled into a room by 2 PM.

Wednesday, 1/23/2019 - Cindy underwent a bone marrow biopsy (right hip with anesthesia) to ascertain the type of Leukemia. Oncologist Dr. Konde (fellow working under Dr. J) came in later with diagnosis - Acute Myelocytic Leukemia (AML). No treatment yet except IV and oral Tylenol for pain when numbness from biopsy wears off.

Thursday, 1/24/2019 - Constant blood draws to track blood counts while labs (at Beaumont) examine bone marrow and blood work that combines to be a growing "pathology" of data the docs use to determine Cindy's health and decide what treatments and meds to use.  Terms like sub-typing, genetic markers, mutations, protogenetics, risk factors are bandied about as we furiously take notes to gain understanding and assurance.  Timetable for all this to come together is Monday or Tuesday, 1/28 or 1/29.

General sense of things: definitely urgency in start treatment as soon as full pathology report is received and evaluated.  At that point, we may seek a second opinion so we've taken some steps to cue that option up. Meanwhile, she is on oral medications to control and stabilize her blood counts, bring down the excess white blood cells, boost her hemoglobin, and prevent complications (such as infection) for abnormal counts.

Friday, 1/25/2019 - Signed release of records form toward securing 2nd opinion that Jan will send to U of M Intake coordinator; Received unit of whole blood about 4-5 pm to help boost her hemoglobin and deal with headache.

Saturday, 1/26/2019 - Feeling unwell - headache hovers at 8 of 10 scale; continued weariness; Easy stroll around ward, Cindy and Glenn; After Tylenol, temp down to 99.5 at 6:15 pm but headache still raging

Sunday, 1/27/2019 - Headache gone when Cindy awoke around 8 a.m. Dr. Konde visited with Cindy and said results are in and they want to start chemo Monday;  I left him messages requesting medical team meet with our family "A-Team" (sister Lori's term) of Glenn, Cindy, Laura, Jan and Michael to review findings, explain treatment plan and answer questions. When I later arrived at hospital about 4 p.m., we requested and received a call from on-call Dr. Stender (see "Dr. J post for all medical team members). Fortunately, Julie and Rich were visiting as he gave us a thorough explanation of where they were at and agreed to come back to meet Monday morning with the A-Team.  He noted that entire practice has been looking at Cindy's results all week. Conversational guy, warm and engaging.  We all liked him much.

Just as I was getting ready to leave, Dr. J. called than decided to come over to visit us despite Cindy's insistent that doing so was not necessary.  He arrived at 7 and patiently covered much of what Dr. Stender did but also dove a little deeper, disclosing his thinking as results trickle in. Lots of medical terms that I wrote down for later look-up.  Suffice to say, he was guarded positive about what he sees going on.  Also, he alluded to her breast cancer treatments, wondering out loud extent that radiation she received may or may not bring on AML.  How he thought out loud with us, rolling biology, genetics and medical terms around in the conversation and explaining them to us as we probed was extremely comforting to us.  Great way to end the day.