Dec 29, 2019 Latest post:
Sep 19, 2020
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William began feeling "off" the weekend after Thanksgiving. His original symptoms showed up as being tired and having a tingly feeling in his head. He felt a little like he may have the flu, yet not. He said he just didn't feel right. His symptoms were sporadic and came and went over the next three weeks before he went to the hospital. He had recently started a new job (after 17 years at the same place of employment) and was excited about the new company and type of construction work. I was so proud of him for this change - it was definitely scary to be changing employers after 17 years and at our age, but he is smart and knew it was the right time and choice. When he called in sick after being on the new job after only a couple of weeks, I knew he had to really be sick (but we thought it was just the flu). William is not the type of guy to call in sick for no reason. He has to be down and out! Now, I have joked about him whining when he's sick, but in reality, he is really tough and very seldom calls in sick to work. He is one of the hardest workers I know!
The next indication was when he wasn't feeling up to attending my firm's holiday party in San Francisco. We'd been looking forward to this trip for quite a while as it was at the luxury Fairmont Hotel. We even splurged and spent the extra money for an additional night. Again, I knew something was wrong at that point, but again thought this was just a weird flu lingering around. William stayed at home that weekend and Jaycie was able to join me at the last minute as my date. We had a great mommy-daughter time, but of course I missed having my husband there (we've decided that in future years William will come for the dinner and Jaycie will join me for the dancing! ha!).
William went back to work the following week, but again felt bad by the next Friday and had to call in sick again. Each time he called in sick, he did go to the doctor. On the first visit, he had told the doctor about what appeared to be a bug bite on his knee (red spot with clear liquid coming out). It didn't appear to be infected, but the doctor prescribed an antibiotic. Just prior to the second doctor's visit, William was again feeling tired and a bit "fluish." He had been on the couch all weekend while I was out of town visiting Jaycie in LA (a prescheduled girls' trip with Kelly and Marley). When I returned home, I noticed that he was still tired and had red bruising on his hands and arms. He said he had bumped his hands at work and just thought it was a matter of getting old and having thinner skin. On Monday, when he wasn't feeling better, he called in sick again and went back to the doctor. At this time, his insurance wasn't registering that we'd paid for COBRA (while we waited for his new insurance policy to kick in beginning February 1st after his probation period). We had a letter from COBRA indicating payment was received and he was insured as of 12/1/19, but Aetna wasn't yet registering the account. When he went to the doctor's, we just paid for the visit at the blood tests they wanted him to do. They thought he had diverticulitis (or possibly appendicitis), based on his symptoms (he was now having sharp stomach pains). The doctor also wanted him to have a CT scan, but he opted not to do this as we'd have to pay for it in advance since the insurance wasn't registering (COBRA indicated it would take 7-10 days for insurance to actually see that payment had been made and everything we'd paid out of pocket would be reimbursed). William just thought it would be a nightmare to get reimbursed for the CT scan and felt that the blood tests would be enough (especially because we just thought it was diverticulitis).
The next day, Tuesday, 12/17/19, William still felt horrible and the stomach pains were increasing. He asked me to take him to the hospital. While we were preparing to leave for the hospital, William's doctor's office left him a voicemail message indicating that his blood test results were in and they wanted him to go to the emergency room. So we went! After about an hour in the emergency waiting room (giving urine samples, blood samples, EKG, etc.), he was taken into the back and placed on a gurney in the emergency hallway.
During this time, we were surrounded by many people who were sick (coughing, sneezing, etc.) until a doctor approached us to tell us that William's white blood cell (WBC) count was extremely high and came back at over 150,000 (normal WBC should be between 4,000 and 11,000). He casually told us that the only time he sees a count so high was when a patient has Leukemia. Yes, he said Leukemia . . . We didn't hear much after that.
Bits and pieces of the conversation came through after that. He said that the lab could've made an error, but the lab technician didn't think so. I explained that William's doctor sent us here because of the blood tests, but he didn't give us any details as to why. We were here for diverticulitis or an appendicitis - not Leukemia! They had to have made a mistake. The doctor did say that his stomach pains weren't a symptom of Leukemia. We held on to that.
I called William's doctor and explained what was going on and asked for the results of his blood tests. The doctor's office told me that his WBC was 161,000. My heart sank. I typed up the numbers in my Notes on my phone, as well as his platelet numbers, etc., not knowing what anything meant, except I knew now that 161,000 was not a good WBC count. I hung up and put my phone away. William didn't ask me what they said. I'm sure he knew by my silence. By the time the doctor returned, I showed him my phone and the numbers. We were immediately taken to a private room. We were both told to put on masks and the door to the hallway was closed. William was immediately hooked up to IVs with different fluids and the doctors began giving him a blood transfusion. Time was now speeding by, yet this was also the longest day of my life. I don't remember the events/timeline for what all came next.
William was taken for a CT scan of his stomach. It was confirmed that he had an appendicitis. The doctors hadn't seen this before - an appendicitis at the same time Leukemia showed up. They were concerned his appendix would burst, yet didn't want to operate because of his WBC count. They immediately began treating him with antibiotics. Numerous teams of doctors came in. There were the surgeons (for his appendicitis), the hematologists (blood doctors), the oncologists (cancer doctors) and an overall team of doctors to monitor what everyone was doing. All doctors (and nurses/staff) have been very kind and sympathetic (even the one who told us about the Leukemia). I actually appreciate how he told us - I'm not sure I could have handled the info if he'd been like "well, I have some bad news . . ." This way allowed the info to sink in slowly without us panicking.
Over the next few hours, William had several blood transfusions, blood draws, and a machine came in to "scrub" out the bad WBC (leukocytapherisis). They had to insert a catheter into his neck for this, and a pic line into his arm. They did this scrubbing procedure twice and his WBC first went down to @70,000 and then, the second day, down to 48,000 (they wanted it under 50,000). They also began giving him chemo pills (Hydrea) to help reduce the WBC.
The next day, 12/18/19, the doctors took a bone marrow biopsy to determine the type of Leukemia. The results indicated that William had Acute Myeloid Leukemia (AML), a type of cancer in which bone marrow makes abnormal myeloblasts (type of WBC), red blood cells, or platelets. There are different subtypes of AML and the doctors had to wait for further tests to determine this. This cancer usually gets worse quickly if it is not treated. So, now we know we're here for at least a month and we need to get fighting!
Unfortunately, shortly after being admitted to the hospital, William began having fevers which went up and down throughout the day. His immune system was so weak and we learned that he now had Influenza B. Great. Fevers and a bad cough - this all meant that they had to wait to start chemo (except for the Hydrea pills) for his body to get well before giving him the horrible chemo which would weaken his system more.
One of the additional tests (for subtypes) that they had William do was a gene testing. William's test came back positive for FLT3. This is a gene change, or mutation, in leukemia cells. Between 20 and 30 percent of people with AML have this mutation. Additional meds will be given for this.
We've spent Christmas in the hospital and it is now Sunday, 12/29/19, and William seems to be back on the road to recovery. His cough is still hanging around, but his breathing treatments seem to help. His fevers are gone. The oncologist has said that he will start him on intravenous chemo (7+3) today. This is 7 days of standard-dose cytarabine and 3 days of an anthracycline antibiotic. On the 8th day he starts the meds for the FLT3. It's 4:30 pm & we're waiting...