The last 36 hours have been interesting to say the least. Apologies for the late post, we had no power early this morning and my iPad was about to die. So. Where to begin.... Spent the morning trying to get follow up appointments set. Called McClaren Oncology Associates (Dr. Layhe's group) and got some push back from the receptionist as Allan hadn't been seen in the office, he'd been seen in the hospital and "the biller" (yes, the biller) had no record of him. I persisted, describing the last three weeks and the whirlwind from awareness to hospital, throwing in the fact that THEY HAD DIAGNOSED HIM!!!! AND that Karmanos had called on Friday to set up the follow up. AND that Dr. Kovalsky had been the diagnosing physician. Yeesh. Finally she said that the doctors weren't in yet and she'd call back after talking with them. We received a call a little bit later with an appointment for a blood draw and possible transfusion pending the results. One down; one to go. Karmanos called (Kirsten from Dr. Schiffer's Office) Allan's cell...he's not really answering the phone much right now, so he played the message which said that we needed to be at Karmanos in Detroit Wednesday at 11 for treatment, then on Thursday back to see Dr. Schiffer. We had thought that we would do the whole thing (blood draw, transfusion if necessary, chemo, Dr. Schiffer) on Thursday (which fit my work schedule better. Tried to call back for conversation and clarification and went through 5-6 (I lost track) DIFFERENT switchboard folks trying to call back the person who had called me. At this point, I was about to throw the phone through the window when I got someone who said they would page her with my questions. Cool beans. We headed out to the blood draw at Dr. Layhe's office. I still don't care for the receptionist-she has an attitude about her that just grates. Turns out they have two (yep, two) "offices" - one to see the doctor and "downstairs" for blood draws, etc. Finally in the right place, there is a stack of paperwork to fill out, which Allan passes to me after filling out the top part with his name, birthdate, SSN, phone number. I'm filling out paperwork and have to do ANOTHER medical history. Really?! The fact that we were just discharged from Karmanos CANCER CENTER didn't give them a clue?! Nurse was nice; experience leukemia nurse; she told us she would call with Allan's numbers so that we would know if he needed a transfusion - we said we'd hang in the area till we heard. This was at 2:30. At 4:35, I called her as they would be closing at 5 and we had heard nothing. She answered the phone and indicated that Allan's counts were low, but not low enough for blood. He'll likely need a transfusion on Wednesday....she's going to be in the Flint office on Wednesday, so we're to go to the hospital admitting desk and go from there. "They'll call with what they need." It's now 6:23 p.m. the day before the draw, and we've had no call. If they'd call, we'd tell them that we're back to the Cancer clinic in Detroit tomorrow and the draw will occur there. As we're waiting, Allan starts to feel like his temp is rising. We go to Rite Aid, purchase a thermometer and sure enough, it's on the rise. Got to 100.5 and stayed there for a couple of hours, so I called as instructed. Dr. Ashkar was paged and called me back in about 15 minutes. We talked, reviewed whether Allan had any other symptoms, and he indicated that the medication he'd been given for pain has acetominophen in it (tylenol) and could be artificially reducing his fever. He ordered another medication for pain and told us that if his temp went to 100.7 at any point, we were to a). call him; and b). go immediately to emergency at Karmanos. He had given me his cell number. I run out to get the new pain pills and missed the pharmacy by "that much" (sorry-channeling Get Smart) - they'd closed 9 minutes earlier. Back home, Allan, Ana & I had decided I should sleep with him so that we can monitor his temp...it had dropped to 98.9 by 9:30 and continued to decrease through the night. As I talked with Dr. Ashkar, he worked to get across the seriousness of an infection: "he may look fine, but he could be dead in two hours". Got MY attention. He is as fine as he can be today; tired, counts are obviously lower as he is very tired and pale. Having Ana here is so good, though - he's laughed several times today and got to show her his beloved orioles (who are on their way back south). I mentioned "decisions" in my title. As I drove to the pharmacy and back - tears flowing, I realized that yesterday's lesson from the Universe was to stop, sit back, and take the leave time I have saved up. I alerted my supervisor last night and am officially on FMLA leave (using sick time) until we get Allan stable. It was just too much and I realized that it was unfair to my staff to do the intermittent thing---consistency is so critical in Special Education. The Unverse seems pleased I listened - Allan's temp has not gone higher than 99.4 all day. On a different note, my Mom seems to have found her guilt trip skills again...
