Outpatient - Day 9 --> 10 Busy, Busy Week
September 26, 2013: Again apologies for no post yesterday; we spent another fairly long day at Karmanos/Harper Hospital, although it was shorter than any other and we got home while it was still light out! Woohoo! After 2 days in a row traveling to Detroit, and 12 hours Tuesday; 8 hours yesterday-we were both whipped. We ate pizza with Sissy for dinner and essentially collapsed into bed. I woke this morning with a pounding migraine-and just enough time to get ready for my "reconnection" meeting at work to bring me up to speed for my return to work on the 7th of October. So-yesterday we were down for an "LP" - Lumbar Puncture (Spinal Tap--every time I say or write that, I think of the movie "This is Spinal Tap!"). Purpose was twofold: 1). take some spinal fluid to test for the presence of cancer cells; 2). administration of a "prophylactic" dose of chemo (Methyltrexate) to the spinal fluid to provide protection to the fluid around Allan's brain. We spent 5 hours (approximately) accomplishing a task that took no more than 20 minutes plus the time Allan had to lay flat to avoid "spinal headache" - an hour. We are both getting tired of the "hurry up and wait" part of this "adventure"...Allan more vocally than I (I take a book, knitting, etc.). When we arrived at Karmanos, I sent Dr. Schiffer's Nurse Practitioner a text to let her know we had arrived; she sent a message back to let her know when we were done and she'd make room in her activities to go over the MRI more closely with us. Had to chuckle-at 3:30 she sent me a text asking if we were still downstairs and if Allan was done yet. Told her we had 15 more minutes and would be heading up to the Dresner Clinic. We got there, had some 'splaining to do with the receptionist as we didn't have an official appointment. Back in a room, Kim flies by, sees us and gives us the "1 minute" sign. Came back a few minutes later and talked with us about the MRI. Apparently there are areas that look "suspicious", but not conclusively enought to call it and subject Allan to radiation (woohoo-we were both apprehensive about that). The lead radiologist is leaning toward, "NO-there is no leukemic infiltrate to the brain or eye orbits", but wants the MRI repeated soon-ish. We are choosing to take that as very good news, and hanging onto it. Today, Allan feels pretty awful (or "oogy"-Allan's word). I went in to my meeting, which went longer than we anticipated, but good, productive work was done - it felt good to be back in the saddle, even for a little while. Sent Allan a text at one point to let him know that meeting was going well, but running late. Asked him how he was and he actually replied~"ok". When I got home tonight, we watched the Finale of Top Chef Masters and then Allan wanted to go for a drive-didn't really care where, just wanted to get out. We took off; stopped at T & D's Coney Island and ordered food-Allan couldn't sit still so we packed it up and went to the Harris Nature Center to eat it outside. The Nature Center was having a fundraiser/open house tonight so we were able to sit at our picnic table and hear some pretty great live music-couldn't identify the artists, but we enjoyed them. Back home-Allan snoozed, I sat with Sissy while she ate the food we brought back for her dinner. I then took the Woof for a walk - the darn bunnies are getting bolder - sitting on the path until we are just a few feet away, then running into the brush. Puppy Dog follows and takes my arm with him...ouch. Worth it, though-he's now flaked out at the foot of the bed. Allan thought he'd like some pork chops, or a rib. So I got dressed (had just put my jams on), we got in the car, and went to Kroger in Okemos. We found one package of cold ribs - grabbed 'em, then headed to Tom's Market. Found some cold pulled pork (another craving at times) and a rotisserie chicken that was actually hot. The activity was almost too much for Allan-he said he felt like he might pass out and the food didn't smell good at all. BUT-when we got home, he ate some of the chicken. I also boiled some eggs and will make egg salad in the morning. Tomorrow is a little less busy. We will likely hit the Spoon for breakfast - Allan has been craving the Smoked Salmon Benny and got the green light to have eggs with flowing yolks yesterday...mmmmm. Then we will go for Allan's blood draw, maybe hit the City Market for some Otto's chicken and head home. If Allan's temperature behaves (knocking on wood here), we do not have to go to Detroit again until next Thursday for an appointment with Dr. Schiffer and the new plan for Allan's treatment-. Dr. Schiffer is likely pulling Allan out of the study as it is apparent that the L-Asperagenase affected Allan's liver function enough that the Marqibo stayed in his system longer than it should have (liver couldn't process it out) and added to the constipation issues. If he stays in the study, he has to have the L-Asparegenase and higher doses of the base drug in the Marqibo (Vincristine). If he leaves the study, he doesn't have to use the L-A and he can adjust the dosage of the Vincristine. Anyway-new plan coming next week. Since I'm going back to work on 10/7, we will likely need drivers for appointments - some of them I will go to using FMLA intermittently, but some won't require my presence. More on that when we know what's what. Later-
