Confections For Cats

From Mat’s journal 3-1-14 They transfer me to Moffitt -  the promise land, in the middle of the night. I’m sufficiently medicated, its comfortable. When I get there my nurse is hard of hearing, their faces are not warm. They say I cannot move around good enough to go to the bathroom on my own since I must use a walker. I warn people about the danger of liquid on my lungs. They asked me the last time I pooped. “48 hours” Liquid diet breakfast served -apple juice -8 oz vegetable broth regular jello- coffee -sugar No pain meds yet. My View We arrived at Moffitt just after midnight. The ambulance parked in front in order to unload Mathew. I had to park in the parking garage and race back to the main entrance. The last time I had been at Moffitt was back in the 90’s when my sister Elizabeth received a bone marrow transplant. And there we were. On the fifth floor, 5 south, in a large room and suddenly I felt so alone. The admitting docto...

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     ...

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.

TEXTS From A Dear Friend ME: At the hospital. They are admitting Mat. We thought he was having liver problems. So they did a cat scan and he has a large mass in his abdomen pressing against his organs. going to biopsy. All I  can do is cry Sent Feb 22 2014                                                     KRISTIN That’s terrible Johanna. I’m so sorry to hear that. Did he ever have his appendix removed? I will praying for y’all. Keep me posted. Are you in dade city or shills hospital? Received Feb 22

Saturday Afternoon, Feb 22, 2014 At the ER, we were immediately taken back to an exam room, and Mathew is prepared for a CT scan of his abdomen, specifically the liver. A doctor came in to ask more questions and went to touch Mathew’s abdomen and said, “Does it hurt here?” and pressed so hard on him, he screamed. I was horrified. I was sitting there when Mathew walked down the hall to use the restroom and give a urine sample. I recall watching him walk away in the hospital gown and wondering when his calves had become so pronounced. He had always been athletic, slender and muscular but the past year seemed to have been gaining some weight, and now I could see even his calves seemed larger. I waited there while they took Mathew for the scan. It would be the last time I let him go for any procedure by himself. Mathew returned from the scan and shortly after the ER doctor came in and looked at me with a bewildered look on her face and said, “We can’t even see his liver. There’s a...

Saturday, Feb 22  I noticed Mathew was jaundiced (yellow), so I took him down to the walk-in clinic run by my doctor's office. Unfortunately, the Nurse Practitioner on duty didn't know either myself or Mathew, and we were met with the same treatment we had met from previous doctors.  "Do you use drugs?"  "Do you have homosexual sex?"  "How much do you drink?" And finally sending me out of the room in hopes that my son would confess to any number of addictions or activities to explain away his ill health. (Later, Mathew's Sarcoma Doctor would tell us how often this happens with sarcomas. A social worker called it 'The Story of Sarcoma'). We were told to come back on the scheduled appointment day to get bloodwork results. But as we were leaving the examining room, the nurse told the Nurse Practitioner that the bloodwork was in. I paused, hoping she would call us back into the examining room to give us the results. I could se...

This starts with the day Mathew was admitted to the Zephyrhills, Florida Hospital. This was the day someone finally believed me and heard me when I said, "there's something wrong with my son." But being listened to this day didn't come easy. Mathew had been living in Tampa for a year after graduating from college. The week up to Feb 13th he and I had spent moving him back home. I felt that if he were closer to home, I could take better care of him and get him to a doctor that would take us seriously. We had been in and out of doctor's offices for months, trying to get someone to realize that there was something wrong. Friday morning, I took Mathew to see my doctor, a doctor Mathew has seen in the past, while in school. At this point, Mathew thought that his symptoms of;  -nausea  -vomiting - red urine was a withdrawal from the Horizant that the neurologist had prescribed and Mathew had stopped taking because it wasn't working and he could no longer a...

November 24, 2017 Where do I start? The story of Mathew's cancer did not start when the medical community finally recognized the problem. It started much earlier, but the road to Mathew's diagnosis is a tragedy and deserving of a blog of its own. This blog will begin with his long-overdue diagnosis. Sarcomas are the rarest cancers and predominantly affect the young and are often misdiagnosed with tragic consequences. Soft-tissue Sarcomas are usually fatal after months of devastating treatments. This is the story of Sarcoma. For reference: The number of new breast cancer diagnoses in the US is approximately 256,000.             Close to the population of Madison, Wisconsin. The number of Sarcomas diagnosed last year, 12,390.                             For a visual of this number see images for Gallagher-Iba Arena in Stillwater, Ok. The number of D...