Confections For Cats

Friday the 28th. Jennifer, the same nurse that gave us the tip about keeping a notebook , comes on her shift. They used mobile computers on stands for patient instructions and information. She keeps coming in the room and checking the computer for doctors orders. She must have suspected things were moving for us. Everything starts to feel like one of those seemingly impossible math word problems. Two or three trains coming from different directions, which one will get there first. Mathew’s vena cava collapses, his liver shuts down or he suffers a blood clot. A few hours later Jennifer comes in to tell us they have a bed for Mathew at Moffitt. She said, “I told them don’t give it to anyone else!”  “Do I need to arrange transportation?” I asked, worried because I wasn’t sure how or where to start. “No.” Transportation was being arranged. We should get ready. It was early evening. Just myself and Mathew, no time to call anyone for help. This would happen more of

Fom Mat’s journal 2-28-14 Fix the liver -What exactly do I have       -what type of chemo do I need swollen because of compression of the vena cava tumor

Review of caregiver tips for that first week. In addition to being there for and with Mathew and keeping up with the tests and parade of doctors I accomplished much by having nurses check for new orders, keeping in contact with the case manager and floor nurse, and pushing, making sure nothing stalled in the process, or was put on the back burner. As a result, I feel that the medical personnel involved also felt my urgency, responded to it and were actively involved at all times to get Mathew to Moffitt. In retrospect looking at all of the lab work that was done in that short week, they covered a lot of ground in eliminating possible cancers. Thankfully our primary doctor realized Mathew could not be treated locally. In just a few days Dr. S said, “He has deteriorated too much.” For example, his bilirubin went from 5.0 on the 22nd (normal is from below 1 to 2) to 7.5 on the 28th. At one point the doctor talked about sending Mathew home until Moffitt contacted us. I

From Mathew's Journal The Morphine Ritual written by Mom 2-28-14 From the first dose this became the ritual.  Mathew pats a spot on the hospital bed for me to sit on. He scrolls on his iPhone and picks a song. Not by an artist I’ve heard of, not a Top 40’s artist or an oldies song. Poignant songs by groups including Iron and Wine, Manchester Orchestra, Ride Away Great Captain, the main ones — sprinkle in some Neutral Milk Hotel and Cat Stevens. Songs whose lyrics hit too close to home. Poignant. I would have told you it was my favorite feeling — a bare tree in the middle of a field. A brisk autumn night, fallen leaves across a lonely country road. A feeling that is both sad and beautiful. Songs both beautifully crafted and with lyrics of life and dying. Poignant, my 24 year old son, playing beautiful songs while the nurse injects his dose of morphine. Then he closes his eyes. He wants the non skid socks pulled onto his feet — another poignant song. And th

2-28-15   From the Notebook Fluid on right side of lung Needs to be drained, done from the back Can be done bedside Send out for testing CAUSE? could be a bodily reaction - most likely this because fluid wasn’t present when he arrived or could be tumor has entered the lung. Mathew had been complaining about his right shoulder hurting (this was from the fluid on his lung). He thought it was from the previous October when he was taken by ambulance from work when they thought he was having seizures. He wondered if the EMT's had hurt his shoulder when restraining him. He will reference this in his music and writing. A local oncologist is brought in who says he will be starting Mathew’s treatment. More news on the diagnosis: -Neg for lymphoma -not traditional carcinoma -uncommon sarcoma -pancreas -looking for rare cancers Again my ignorance, I thought that a rare cancer would get more results. Backward thinking. Here is a photo of t