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Showing posts from April 1, 2018

Texts Between Me and Mathew

Just when I thought we were getting into some sort of  routine,  things change. I was having to go back and forth to my house twice a day, to keep up with things there, while staying with Mathew at my sister’s. Usually in the early evenings, when I was gone, Kathleen (Tia), set an alarm to double check that Mat took his 7 p.m. meds. My Mom was cooking and sending breakfast and dinner over to Mathew in takeout containers. Texts between Me and Mathew   3-20-14 Got to Pharmacy with 5 mins to spare. Everything ok. Tia alright with company. Sent 3-20-14 Yep. So far so good. Rec’d 3-20-14 Victoria there? Sent 3-20-14 Not yet. Rec’d 3-20-14 Did you take 7:00 meds? Sent 3-20-14 Yep. Rec’d 3-20-14 I’m making a spreadsheet and printing copies. Sent 3-20-14 Ok sounds good. I can help. Rec’d 3-20-14 Are you coming back tonight cuz I’m out of bottle water. I could maybe

Daily Care of Medical Devices

At this time Mathew had, in addition to his oral medications, the following: 3 Lumen pic ( a port will be inserted later to replace this.) a biliary drain (cath) and collection bag a lung pigtail (cath) Neupogen Shots It took both of us to take care of everything each day.  F rom Mathew’s Journal 3-20-14 Saw the home health specialist today. Went better than expected. The Home Health nurses were always very nice and efficient. They would come and do an assessment on Mathew, then give the shot, check, and flush the pic line.   At night, Mathew usually wanted to wait as late as possible, he and I would take care of his biliary cath and lung cath. I was always so exhausted and dreaded doing these things. It took both of us because Mathew couldn’t reach and see clearly to do himself and because my hands are so small I needed him to help hold bandages and tubes. And of course, I always worried about hurting him.  The yellow fluid is from his lu

From Mathew's Journal, 3-21-14

From Mathew’s Journal 3-21-14 Three times now I have woken up thinking I was being talked to. The first time when I was starting chemo and they were giving me blood. I dreamt I was someone else, talking to a group of friends. When I awoke I had the distinct impression that the packet of blood was talking to me. And I could almost see it glowing in my mind’s eye. The second two times was when I was lying on the couch and it was late and I dozed off. I awoke and Sequel is nudging against me “I thought you had left. I heard rumors of such ??coming back to this home. Could it be you? Could it be you? Yes, it is you! You’re back! You’re back.” I’ve worked myself into a frenzy with note taking and trying to organize everything. My anxiety starts to cripple me and I decide to take an Ativan.  I bathe myself with baby wipes and look in the mirror. “You’re 24 years old with a rare type of cancer. It would be strange if you had it all figured out.” ?? I can’t

Texts From Allison

Texts from Allison, my niece I mentioned from when Mathew was first admitted to the Zephyrhills Hospital. She was in Orlando going through her Oncology fellowship.                   How is he doing at home?  pain still controlled?                   Received March 20 Yes swelling down too. He's trying to get his  days and nights swapped LOL Saw Dr. Reed before we left. He felt that cancer  was already responding to chemo Sent March 20                    That's great. And if is swelling is going down that's a sign                     it is too.  Bet he is more comfortable and less snippy with you                     too now that he's out of there?                    Received March 20 Has been a lot less snippy since  starting chemo Sent March 20                      That's good. Finally having a plan probably helped in                      addition to feeling better                      Received the March 20 Yes S

The Hospital Poem by Mathew Rodgers

Mature content. I found this poem yesterday. It goes back to the post about sperm cryopreservation when Mathew was first transferred to start chemotherapy. It is probably a first or second draft, I am not editing it further at this point. T he Hospital Poem  by Mathew Rodgers Close my eyes and have visions of the NC mountainsides spinning around me with boars, squirrels and deer, unseen, unsung, but present. Wheeled down every corridor past healthy people. Past unhealthy people. Wheeled down corridors where the doors close automatically and the walls lean in hungry and ready to devour us - the unhealthy. Drain strange sauce from my right lung twice My penis looks like a creature from a wax museum, Friends and family visit - smiling faces. The more my limbs swell the harder I find it to be witty and clever. The more my lungs wheeze. Air doesn’t fill the chambers. As I’m about to fall asleep a woman with a strange mask puts it on my face. I breath

Pre-diagnosis OTC Meds

The situation which brought Mathew and his cats from his apartment in Tampa to Zephyrhills Hospital and then to my sister’s home in Dade City meant that his belongings had been packed in a hurry. So those first few days home, I spent some time unpacking his books, clothes and repacking items for going through later. Here and there, so few at first, that it didn’t dawn on me what I was finding, I came across over the counter meds, for back pain, gas, itching. As I started putting them all in one place and the pile started to grow I realized I was finding all the ways Mathew had been trying to control his symptoms. I can’t tell you how heartbreaking this was for me. It still makes me feel sad that my son had suffered so much before we found a doctor that took his medical complaints seriously. Here is a picture of many of them....some were thrown away at some point. I know that he also had coconut oil for oil pulling, and fruit and vegetable gummies.