Second I.E. Chemo for Soft Tissue Sarcoma Cancer

Second IE chemo

I learned by mistake. When Moffitt calls to say you will be admitted that evening, they don’t mean 7 or 8 o’clock. More like 10 o’clock or later. Eventually I saw how this made sense, but at the time it was another bump in the road for Mathew. He was getting so anxious anticipating the hospital stay and the chemotherapy that instead of sitting around we decided to drive down to Tampa and get something to eat figuring we would be called shortly afterward. Nope. We ended up sitting and waiting in the car. Adding to Mathew’s discomfort was not on my list of caregiver roles. I felt terrible then and again now as I write this.

Anyway, it was quite late when we received the call and went into admitting. It only took a few minutes once we were there before we were able to go up to his room.

The following are texts between me and Arpie, Me and Diane and me and Allison.

Late night both of us exhausted. Chemo

started at almost 5 am. Still running. He’s

been sleeping. Has been nervous last few days.

Sent April 16 to Diane, Allison and Arpie

I know you are exhausted! Diane or I one

will stay tonight. I am very frustrated with

the lack of communication between departments.

Rec’d from Arpie

Next time I will call admitting the day before to

make sure he is on the schedule.

Sent to Arpie April 16

But it’s like Mat and I keep saying, “What if

people are not as proactive and

aggressive as we are?”

Sent to Arpie April 16

Certainly requires determination

that we must maintain one way or

another. Kick ass and take names.

Received April 16 from Diane!!

I went home that evening and Diane came to stay with him. As necessary she had to leave before I got there.

I get here and he’s not in his room

and didn’t take his phone, going to

find him.

Sent April 17 to Diane.

This goes back to a caregiver tip, that he never went to anything alone. When I arrived and saw that he was gone and obviously it was all of a sudden since he left his iPhone behind I went and asked the nurse. She said he went to IR and she would check to see why. I didn’t wait around. I went down the back/transport elevators and went straight to IR waiting room, knocked on the door and when they saw me they let me in.

Right now he is in IR. Removed tube

in the biliary drain and changed for a

fresh one.

Sent April 17 to Diane

They took a flow path and the

biliary drainage give it a test to

run to drain internally!!!!! He is

wiped out. Just sleeping.

Sent April 17 to Diane

Apparently he went to sleep

yesterday right after I left and

slept until 10 am. 14 hours.

Sent April 17 to Allison

He’s getting higher dose

and is really feeling it.

Sent April 17 to Allison

Yeah, I bet. It’s rough stuff.

Rec’d April 17 from Allison

He is getting full dose so he is in

a lot of pain and feels sick. He

has a lot of discomfort where

they internalized the bill drain.

They are going to drain externally

and see if that helps. Need to

figure out some way to bring a

little joy to his life.

Sent April 18 to Kathleen

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 ...

Why is it Called Confections for Cats?

I want to take a moment and talk about why Project Mathew is called Confections for Cats. The main reason is that it was going to be the title of his first album. He had sketched up some artwork. We were working on it in Photoshop. Here is an early permutation of the artwork. Mathew's life, his story is mainly about music, his music, and his journey through cancer. When he created his Facebook page, he named it Confections for Cats and I continued with that name. I have been thinking about a logo, a way to incorporate cats, Sarcoma and his music. I like to brainstorm. So, I was thinking about the word confections. When Mathew first told me that title, this was before his diagnosis, I recall thinking about how he practiced his guitar into the night and early morning and that his cats have been his constant audience. Sweets, confections for his cats, and his music as delicious morsels for our ears. I looked up the word confections and yes, a confection is a sweet. Bu...

The Rollercoaster of Chemotherapy Fewer Highs and More Lows

TEXTS BETWEEN ME AND ARPIE Mat sees Dr. Reed Thursday at 9 and then at 1 he goes to have biliary stent changed to a larger gauge. We had to reattach a bag this morning. Sent May 12 I have Dr's appointment myself Thursday will call after and see if you are still with Dr. Reed. ...

Confections For Cats

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