Confections For Cats

The first few days at home Mathew spent a lot of time on the couch. He was still too uncomfortable to lay flat on a bed. He also had trouble sleeping.  He had been loaned a laptop (his had broken before his diagnosis) and he was able to spend time on social media, stream TV shows he thought would make him laugh and listen to music. The loan of the laptop (from his step-sister’s Dad) was one of the things that made a tremendous difference in his last year of life. My sister Kathleen moving him and his cats into her home was another. So many people supported us in many ways. Some offered to run errands, even run down to Moffitt to pick up medications for us. Cards with messages of love and support. Money, gas cards (we racked up the miles going back and forth), grocery gift cards and many more I will mention as I go along. In fact, one of the first things Mathew and I did was start a list in order to start writing thank-you cards. For some reason, we, and especially I,...

From Mathew’s Journal 3-20-14 Yesterday got back from the hospital. I’m feeling a bit more chipper today. I tried to rest my eyes plenty. The things that are causing me the most anxiety are memories and moral questions. I don’t know why they haunt me now. I wrote down a quote, I don’t know who from…. “You don’t need to understand what’s happening for it to be happening.” Strange, as this uncertainty is what gets most at me now. To Do List (moving this to journal) Organize meals - working on -go grocery shopping - mindful of PH - more needs to do - email Allison     -  Dr. Pharr     -  Dr. Hobbs     -  Candy     -  Virginia      -  Sue Henry     -  Sarah Mann     -  Big Mike set up alter organize files and folders transfer poems to collection transfer all dirty cat mixes transfer all clean cat mixes Home Healthcare - lun...

As I mentioned in the last post, I spent some time that first night organizing a schedule for Mathew’s many prescriptions. I also mentioned the need to have prescription bottles for carrying medicine with us as we went back and forth for appointments or any time we left the house.  Here are two photos showing the medication list sent home with Mathew from Moffitt and my attempt at a spreadsheet. Mathew came home shortly before Easter that year. Carlos gave him an enormous Easter basket, the theme was monkeys. As a teenager, Carlos nicknamed Mathew Chongo. It stuck.  One of the items in the Easter basket was this small plastic bag with a cute monkey on it. It was the perfect size for carrying meds, alcohol packets and supplies for the biliary stent and bag, and a granola bar or two. We called it The Monkey Bag.  Here’s a picture of it in an examination room in the Sarcoma Clinic.

Mathew’s discharge was such a relief, but then in other ways, there were additional, unexpected stressors. One of them was the medications. In this post, I want to share the information we were given at discharge, an important caregiver tip about transporting medications, and the medication list for Mathew. We went home with a lot of information and medical supplies. It was overwhelming but I didn’t have the luxury of taking any time to rest physically, mentally or emotionally. Mathew's care was constant. From Moffitt, we were given a list of printouts. One page with the number for the Sarcoma Clinic, the names and numbers of Dr. Reed, the Inpatient Social Worker, The RN Case Manager and the Home Health agency with instructions on Activity : As tolerated and Diet: Immunosuppressed (This is deserving of a stand-alone blog post). Risk of Infection information, when to start Neupogen injections, the promise of more appointments to be scheduled, and when Mathew’s port wil...

Mathew’s first discharge Part Three Going Home!! It was right at 4 weeks from the day Mathew was admitted to the Zephyrhills Hospital with problems unknown, to his transfer to Moffitt Cancer Center in Tampa to a final Diagnosis of a rare soft tissue Sarcoma, to his first round of chemotherapy, 5 days, two chemo each day, to the process of being discharged. I have covered a lot of things that happened the last few days before he went home, but the paperwork, dealing with the insurance (Thanks, Diane!), and everything else required went amazingly smooth.  This post will cover the insurance and pharmacy dealings through text messages between me and Diane. I have my notes from The Notebook about taking Mathew ‘home’. Texts Between Mom and Diane I may be a few minutes late. If he is awake let him know. I should have  just gone to Walmart and bought a  cheap shirt and stayed there. I  drove home tired and accomplished nothing and can barel...

This post will consist of text messages, an article quoting Dr. Reed, the Sarcoma Doctor, and an explanation of how the pain pump works for dosing and translating all of that information into meds for going home and why it takes a day or so for the transition. Texts Between me and Diane Not home today. Still  transitioning to oral  pain management. Sent March 17 Stent won’t be internalized for a few months  after tumor shrinks and takes pressure off of bile duct and liver. VAC is 12 hours. For going home you need to go downstairs and verify insurance and take Mathew’s I.D. I will cash check  today and give you cash and when you are here we can go to the pharmacy together and figure it out. Sent March 17 I’ll plan on being there about 8:15 tomorrow to get insurance info taken care of. Been on phone with them for past hour getting other claims straightened out…..again. Have they in...