Confections For Cats

My niece, Allison was invaluable to me during this time. Here are texts between us regarding Mathew’s low white blood count, his next appointments, my fears that they have given up on him and another caregiver tip. Txts betweem me and  Allison Two days ago Mat had to come back to Moffitt.  Spiked a fever and had diarrhea. No infection and only the one fever spiked  but his white blood count low and still dropping. So until they rebound to a certain level so here  we sit.  Good news is 95% of the swelling in his legs is gone. Sent March 24                                   Sorry. Didn't know you guys went back.                                    Sorry I've been so preoccupied with work.                    ...

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,...

Within days of Mathew’s admission to Moffitt, love, and support from so many people started pouring in. Throughout the year, it continues, and since our world is filled with diverse situations and people, this support reflects those differences. My family is Catholic, so my Mom and Dad brought in prayer cards. A dear friend of my sister, his Mother, sent A Special Healing Gift. Mathew was enrolled in the League of Saint Anthony to be remembered in daily masses and prayers. Tibetan Nuns on the other side of the world were praying for him. Soon a small table was set up with these gifts and cards, eventually, it would become a healing altar. Many faiths were represented on this alter and Mathew felt so blessed that so many people held him in their thoughts and prayers.  I was reminded during this time, what I had learned many years ago, that prayer is an action word.  James 2:14-26 “ 17  So faith by itself, if it has no works, is dead.”  *** **...

This is still that first day, Saturday, March 1st, 2014. Mathew was very concerned about the amount of pain medication he was already on and becoming dependent on it and what will happen once he is no longer receiving treatment. FROM THE NOTEBOOK Dr G talked w/Mat about the difference between “dependence” and “addiction” and he cannot become addicted if used only to manage pain - they will wean him off slowly. “What happens next?” I ask. He tells me that they request the biopsy slides from Zhills Hospital and get them to their own lab. “What is the timeline for that?” He says they send the request on Monday and will probably receive them by Friday. My niece, Allison, had already told me that I can pick up the slides myself. So I offer to drive up Monday and hand deliver them. Mathew needs to sign a release and call up there to let them know I will be the one picking them up. Again, ‘crunching the timeline,' a day here, a few days there may not seem l...

I have a list of things I wish we had known or knew we needed when people asked how   they could help. This will be the first one. I know many people are diagnosed with cancer, start treatments and live a modified life, that somewhat resembles their normal life and routine. One of the things we learned and I had no idea though my sister and Mother had breast cancer and a family friend had throat cancer was that some types of cancer, this being one of them, are a series of scheduled medical procedures and doctors visits mixed in with emergency dashes to the hospital resulting in days inpatient, sometimes wondering if this was the end of the road. With that in mind. One of the caregiver tips I would recommend is get a bicycle basket, the kind you attach to handlebars. The kind that can attach with a simple over the bar hook.  This is for the IV pole.  Every time Mathew went to go to the restroom, he needed the IV unplugged (often quickly) and most tim...

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 ...

Six months, possibly more, before his diagnosis, Mathew had a personality change. The Sarcoma Doctor at Moffit told me that by the time most young people are diagnosed with these types of soft tissue sarcomas, they have lost their jobs, their friends are avoiding them and family aren’t speaking to them. They are alone. So by this time, the tumor is so large, and it is impacting waste removal from his liver, gall bladder, and kidneys. He is full of toxins. My niece assured me that after his first chemo, Mathew would be back to normal. Each day when the doctors would come in, Mathew had already made his own notes and lists of questions (and we parents had made ours in The Notebook), but Mathew insisted on asking his first. Then we would ask ours. But what was so poignant was each time Mathew was through talking to the doctor or doctors, he would ask the same question. “Is there anything I need to be doing.”

FROM THE NOTEBOOK 2-27-14 Can more pain meds be given? Rash on back Mild fever jaundice returning concerned he may be bleeding internally from procedures. By this time we had already decided that Mathew would never be alone, that meant for the most part, that I was with him overnight. Not that he slept much. TIP:  I learned that while Mathew had company during the day, the best use of my time was crunching the timeline. Checking which orders were coming through, checking with the case manager to see what was happening towards getting Mathew to Moffitt. You can’t just sit and wait.  They knew when they saw me walking up to them that I wanted an update. Someone was sitting at a desk in the hall outside of Mathew’s room working on the logistics. I was impressed, but I know my nudging made a difference.

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     ...

TIP One of Mathew’s nurses suggested we get a notebook that we keep with Mathew/in his room. So notes can be taken, questions added for asking the doctor and any other observations or instructions. This was important since the people who took turns staying with Mathew changed during the day. The notebook is an invaluable tip. One of the ways we utilized this immediately was to list any questions we parents had. Mathew didn’t want us to ask the doctors anything until he was through talking to them. He was 24 at the time and an intelligent adult, and it was his decision, but as a Mom, it was also difficult to stay quiet that long!  Now is a good time to explain that Mathew was only a few months (maybe) from death at the time of his hospital admission. The tumor itself, (as was explained to us later at Moffitt), excreted toxins. Mathew suffered from hepatic buildup, which also caused his liver to be toxic, which caused Mathew to suffer from hallucinations and menta...

This is something I will mention often. It is important to know as a patient and/or a caregiver the ways you can shorten the wait, crunch the timeline, as I call it. I believe several ways I managed to shorten the wait or made decisions that resulted in a shorter wait is the reason Mathew survived for eleven months. Especially since the doctors at Moffitt were concerned, he may not survive until his first chemo. Of course, I didn’t know that until later. If I hadn’t taken Mathew into the walk-in clinic that day,  I don't know if his blood work would have raised any alarms before Monday morning.  But it did get him admitted sooner. Even if it had been Monday, rather than the Wednesday appointment, he would have been admitted soon anyway because his condition deteriorated quickly. At the Zephyrhills hospital, at that time, biopsies are only done on Tuesdays. That’s when the Interventional Radiologist is there. At the time I was very anxious that we had to wait and now in r...