Confections For Cats

“If you had a year to live, what would you do?”
 People ask each other this question over lunch or sitting on the couch at home watching TV. More often than not people’s lists include travel, adventures, skydiving, seeing the Grand Canyon, or any number of things. There was even a movie where two older men were dying and traveled around the world. For Mathew, the reality was, what can you do in 11 months when half of that time was spent in the hospital, often times too sick to read or write because this was the reality of stage 4 soft tissue Sarcoma. The other half of the time, at home, immune compromised, all the time in pain. Each day provided maybe three hours of energy and concentration. Add in doctor visits and outpatient procedures and anything beyond that was a bonus. A few times we stopped on our way home from appointments and Mathew bought a book or a new game or we stopped for lunch. Fortunately, two of the things on Mathew’s bucket list was passive on his part; ...

M athew's Journal 3-8-14 — From here forward this book will no longer be notes of doctors words —Those type of words invariably become very scary They are large, but unseen, bird of prey. A hawk descending upon a young turkey or chicken. The rest of us standing back, aghast. Our heads and necks filling with rainwater as we stare at what was previously a clear sky. This, of course, should not be taken as a dissertation of doctors, only their words. One of them, Dr. Knight, sat down with me today and let me know that I may die. Which was always a possibility, but more than I thought originally. She asked me what were four things I want to do before I die. I said:  1. Finish my album.  2. Finish my book.  3. see my nephew born.  4. see Russell’s 14th birthday. She then asked me how close I was to finishing the first two. “About 75%,” I said. She wrote that down. I felt the air pressure in the room shift. It became harder t...

That first week Mathew’s hospital room, which was quite large, took on the typical hospital room appearance with flowers, get well cards taped on the wall, snacks and goodies dropped off by friends and family. Parents, Grandparents, Aunts, cousins, school friends, a Priest and even several of Mathew’s College Professors made the 40-mile trip to wish him well. A co-worker of Arpie’s, came all the way from Orlando with "get well wishes" from the Firestone's Orlando District Office. Mathew has twin cousins, Jason and Stephanie. 5 years and 5 days older than Mathew and Joseph. Jason made a trip over to see Mathew that first week. Later Mathew said to me. “Mom, it surprises me that my cousin Jason has been to see me.” He had been so sick with the build-up of toxins, bile and everything else that was going wrong inside of him, that he hadn’t remembered his cousin’s visit. After just a few days we realized that all of the activity was exhausting for Mathew and we started ...

From Mathew’s Notes  ***** 3-6-14 Talk to Dr about genitals swelling Get test done on testicles - imaging is clear -edema is the problem. Talked with Dr. Knight - she said the possibility of death was much higher than expected due to pressure on my organs, especially because of vena cava. Dr. Gonzales is not optimistic. Wheezing, probably due to fluid in lungs. Chest x-ray to monitor fluid levels in lungs. 8:30 p.m. temp of 101.7. Highest in two weeks.  Nurse says temp has been up and down. Blood sample taken from pic line Blood sample taken from arm Bile sample taken All taken to test for a bacterial infection  Heavy doses of diuretics and laxatives give some relief from everything caught inside. I took a moment before writing this post.  The last few posts have been a series of medical dramas, fever, fluid in the lungs, possibly organ failure and so on. It may be a tough read if you read them in a row. I considered b...

These are two screenshots from a disc of Mathew's imaging from the first week in the Zephyrhills hospital. The view is from the top of his head, down through his body. The top of the image is Mat's chest....you can see his spine on the bottom. The two black/open spaces are his lungs and the two smaller open spaces, I believe are his aorta and inferior vena cava. The second picture from the same view shows his abdomen full of the tumor and his organs pushed out of place. Note the size of his upper chest (and Mathew had always been in good shape) compared to how misshapen his body had become.

It would be easier, maybe, to have thrown out or burned all of the medical paperwork, taken one last look at the pictures and texts from this time and let them go, but it wouldn’t be the right thing to do. When Mathew and I discussed the need for this blog, he was adamant. It needs to be here for someone, even just one person. There needs to be more education so these Sarcomas are diagnosed sooner. Instead of like Mathew, who was told he was probably just an alcoholic, maybe a drug user, or possibly just crazy. Yes, that’s the horrible nightmare Mathew was living before he was finally diagnosed. But that is for another blog. For me, this is like one of those deep wounds that heal from the inside out and oozes the entire time. It is the least I can do for Mathew. Sometimes, I sort the papers and put them in order, Mat’s Journal, The Notebook, random thoughts I’ve jotted down, and circle them for hours and sometimes days before I can sit and write. Other times after I’ve written 4...

From Mathew's Journal Notes from Dr. Gonzales 3-5-14  - pathology slides in right place.   There was a point where we thought that after my efforts to go get them and hand deliver them, that they had gone to the wrong place. -  Damon Reed oncologist **Expectations - broad category small blue round celled tumor - if it is Ewing they need a confirmation at a molecular level. - my liver cannot tolerate chemotherapy - hence the need for the stent. - the stent may or may not be permanent. Notes from Dr. Gonzales 3-7-14 - everything hinges on whether the liver improves - large tumor back of abdomen - the liver - falling short of saying what I have is incurable - the liver needs to keep getting better - 20% to 25% chance of response for Sarcoma - different types of tumor may respond better - vena cave still a danger - Bilirubin at 5 bring down to 2 - got to find out what type of tumor Hindsight,  or what we didn’t know,...