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.

From 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 lung. The pigtail cath was inserted on Mathew's right side, which is why he wasn't able to bandage or attach the long cath by himself.

Every other night I took off the bandage on his lung pigtail, attached a catheter and a collection bottle (vacuum) and when I popped the tab, it sucked any fluid out of Mathew’s lung. It was always painful for him. Everything had to be done with extremely clean hands since I can’t wear gloves and manipulate my fingers. So I would wash my hands and use lots of hand sanitizer. There was a lot of cleaning, attaching and detaching, swabbing, cleaning attachments and bandaging. The bandage over the tubing included layers with slits cut into them to fit around the tubing.

After this, I would sit on Mathew’s bed and organize his meds for the following day. He would work on the computer or watch a movie.

Replace the 3 Lumen Pic Line with a Port

Mathew's 3 Lumen Pic Line was replaced with a Power P.A.C. Both Mathew and I were given Medical I.D. cards to carry at all times. I have mentioned before that texting from the DRC is almost impossible. The staff told me it used to be the X-ray department so the walls are leaded. Again, the phone tree would have helped so much. I texted the following information to my niece, my sister and Mathew’s Dad and Stepmom. And probably Joseph and Carlos. I know that could have been reduced to two texts, three at the most. At the time I didn’t know about group messaging as my phone was an old Android. Texts Between me and Diane Hi. We are at the hospital early because Mat is in a lot of pain. We think the bill stent may have moved. Sent 3-31-14 Because he was NPO for other procedure they should be able to fix today. Sent 3-31-14 In the DRC sending texts is almost impossible so if you don’t hear from me for a while don’t worry. If ...

A Cancer Poem by Mathew Rodgers 2014

From Mathew’s Journal 4-5-14 “I lie awake in my pain bed metallic noises chirping from my strange computer companion”

Hair Loss After Chemo for Sarcoma, My Son's Point of View

I can't imagine or pretend to know how it feels to lose your hair because you have cancer and the chemo causes your hair to fall out. I only know what I saw with Mathew and years ago, my sister Elizabeth's experience as they lost their hair to chemotherapy. But it was something that affected Mathew more than just the initial hair loss, it had nuances. Here is a journal entry. It's short but I think it speaks volumes. MATHEW’S JOURNAL 5-23-14 Lately, I’ve been envious of people’s hair. Well, I guess not envious of other people’s hair but missing mine. I told my Mom about it and expressed to her that I was afraid I was falling prey to vanity. She expressed the idea that I may be missing having hair because it’s part of being healthy. I do miss having a life and at the same time, I’m afraid that I may never have a full life again or that I may lose what’s left of the one I have. - I’ve been thinking about dying a lot lately. I don’t know wh...

Confections For Cats

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