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

About this Blog, A Journey Through Sarcoma

Confections for Cats, A Journey through Sarcoma is a chronicle of my son's journey through Desmoplastic Small Round Cell Sarcoma. It is intended to educate and inspire by using Mathew’s thoughts and feelings, dreams and fears through a variety of mediums; art, music, and writing. Through factual experience, what we learned and what we wish we had known. Mathew’s desire was to give meaning to his journey and in the process help anyone else on a similar path. The last possible explanation in my mind for my son’s health problems was cancer. Even the words “the scan shows a large mass” didn’t lead me to conclude cancer and when the cancer diagnosis was confirmed, I still wasn’t prepared. My Mother is a breast cancer survivor and my sister Elizabeth passed away three years after her breast cancer diagnosis. I thought I knew what cancer treatment and living with cancer looked like, but none of us could imagine or be prepared for how all semblance of routine and normalcy had alre...

When a Cancer Patient Has a Medical Emergency

3 Days in the DRC, Part 1 If you haven’t read my first post about the DRC at Moffitt and how it works, since Moffitt does not have an ER, you can read about it here. https://confectionsforcats.blogspot.com/2018/04/neutropenic-fever-after-ie-chemo-and.html In summary, the DRC is where an existing Moffitt patient is directed to go if they have a medical emergency. Usually, we would be there a few hours or overnight (since we arrived at midnight or shortly afterward) until they had a room for Mathew on the ward. This particular visit Mathew stayed in the DRC three days. As mentioned in my other post, the DRC has maybe two rooms with a bathroom; otherwise, one bathroom for about a dozen patients. In Mathew’s case, a patient with a lowered immune system. This time Mathew was in the room furthest from the bathroom. When inpatient, we had a routine for getting him to the bathroom. First, he needed the IV unplugged (often quickly) and most times, I ...

The Chemo Bell at Moffitt Cancer Center

Bells ring. Bells, chime, toll, peal, resonate and resound. Bells foretell, warn and celebrate. The Chemo Bell The Survivor Bell Cancer Centers have one or several large bells, each with a large clapper. They are mounted on the wall and when a patient receives their last chemotherapy or radiation treatment for cancer they ring that bell. Mathew and I heard the Chemo Bell in the Infusion Center at Moffitt ring one time. Early on our journey. Everyone clapped and cheered. Mat and I stopped and looked at the bell that day and I thought at that time, it was a possibility for Mathew. Bells have a vibration. When a chemo bell rings, when a person survives cancer (even if it’s for a short time) they resound for the rest of us. Their survival reverberates and gives the rest of us hope. I found another chemo bell on the 5th floor at Moffitt, in the hallway, past the patient rooms. Next to the chemo bell was a copy of a photo of a patient surrounded ...

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