Confections For Cats

2-27-2014 The first entry into Mathew’s new journal is written my me….dictated by Mathew. Jack Kerouac supposedly vehemtly opposed to rewriting, he said “say what you mean the first time around.” I don’t agree with that but I imagine that these words will get added to the 1,000s of other words and my words too. yellow skin - yellow lips - bleeding gums; Mom relays my new color while I sit out on the porch of my Grents (Grandparents) trailer. I have been sick for several months now. Back in hospital room I nod out probably from the drugs which they have given me. Enough to make Hunter S Thompson proud. After I have been given morphine by a  smiling nurse if you remember your good Southern manners you’ll nod off a lot and not even realize it. A wise man who wants to stay away from the pain in the waking world will keep his eyes closed and mutter an incoherent “What?” A foolish man will wake up and answer with a question. Apparently I am both. White sh...

Biopsy day Tuesday 2-26-14 In my ignorance, I thought, biopsy, a few days later diagnosis, then treatment starts and we keep moving until we are on the other end.  Besides frustration, my ignorance kept me fueled and pushing for those around us to get things done. I don't recall exactly, but I believe the biopsy was in the morning. Extra pain meds were ordered so Mathew could get through it. His level of pain was out of sight. As we learned what the cancer was doing inside of him, each problem it created, each organ it intruded on; each one, a source of great pain. Mathew's Dad and I went down with him to IR (Interventional Radiology). The biopsy was going to be taken through his back, close to his liver. To do that Mathew had to be on his stomach which was excruciating for him. Arpie and I were sent to a waiting room, we were the only ones there. After a while, the door opened. A man in scrubs with his face mask pulled down strode into the room and...

Mathew kept a journal for years and always had it with him for every doctor's appointment and hospital stay. Even when we went in as an emergency, but he didn't have one with him for that first admission. I don't think we expected him to stay. As it turned out, a former girlfriend's father was on the staff at that hospital and brought Mathew a new journal. Here is the inscription: To Matt, Inspiration comes from the damnedest places. Alan 2-27-14 Alan also brought a guitar to Mathew's room. Such a thoughtful and inspired gesture. Mathew was a musician and practiced many hours a day. As sick as he was, he picked up that guitar and played for the nurses at the Zephyrhills Hospital and at Moffitt, since the guitar made the transfer with us.  Though it stayed at home the rest of the times Mathew was inpatient at Moffitt I believe that because it was there, in the beginning, it created a continuum from pre-diagnosis life, to life with canc...

Following is an entry from Mathew’s journal, June 2014. He is reflecting on how this started. “I fell asleep on my Grandmother’s couch and had disturbing dreams. -A couple of hours later, I got a call from the nurse practitioner. She asked how I was doing, I wasn’t doing any better, and she told me to go to the ER. -Once I was checked into the hospital, I told them I was reacting the Horizant (I have edited part of this because he has confused Horizant with another medicine he is receiving at this time). The Doctor smiled at me, fittingly and pressed on my abdomen near my liver. I screamed out in pain; a pain I did not know was possible. Then she had me rushed away to get an abdominal scan. (When this same Doctor came in to give us the results of the scan, she looked frightened, as she should have, since pressing down on Mathew like that could have caused tremendous problems. Again, she that assumed he was having liver problems due to his own misconduct). ...

My niece Allison was going through her oncology fellowship in Orlando, Florida, at this time. In the beginning and throughout the entire time, she availed herself to me whenever I needed her. She also gave me information that helped me crunch the timeline and navigate the journey.  At this point, I am texting her saying they want to send him home. It frightened me that he was in so much pain. I couldn’t imagine being able to care for him at the house. She messaged me back and told me not to let them send him home, that I didn’t have to allow them to release him under those circumstances. As I am writing this, I wonder if he had been sent home if it would have taken longer to get him to Moffitt. I believe because the doctors came in every day and saw him failing, dying, they were pressured to pass his care on to a more experienced and knowledgeable medical team. Specialist for cancer, at this point, that was still unidentified. FROM THE NOTEBOOK     ...

Monday  MOM He had MRI. As soon as we get  results or talk to Dr, I will call 2-24-14 Mat said to tell you sorry he’s feeling crappy. Will talk to you when he can. 2-24-14                                                                                    He’s been in a lot of pain today. 2-24-14                                                                                  JOSEPH     Biopsy yet? 2-25-14 MOM No. Dr just here, said test showing originating from liver or pancreas, negative, whi...

Mathew’s Dad, Stepmom, and I had distinctive note taking styles. Here are the contents of one page in the notebook. This represents the questions we had and information the Doctor was giving us. Questions When biopsy? How biopsy? More scans? Lower abdomen Info from Doctor tumor markers 6 x 5 inches (the size of the tumor).   NOTE: It gets larger before chemo is started. Where it comes from ????  Right kidney Right peritoneum Pressing on bile duct Pressing on hepatic artery ?? liver may be in two places Monday Dr. John Moffitt At the same time, Mathew was making notes in his journal.