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.

Rec'd May 12

Okay

Sent May 12

May 15th

As usual, we went to blood draw first.

Gold valet. There’s always a lot of traffic, vehicles and foot traffic. Drs and others moving between Moffitt and the Stabile Reseach Building.

8:15 blood draw. More than likely, the therapy dogs were in the blood draw waiting area.

This was one of those places where we met other caregivers and patients and heard other stories/journeys. The high wall of windows gave it an open, cheerful atmosphere. At least for me on the surface.

If we had time, Mathew and I stopped by Starbucks there in the hospital and each got a coffee and then headed up to the Sarcoma Clinic. A few times we sat at one of the tables there and enjoyed our coffee with a snack.

This day, the Sarcoma appointment was at 9 o'clock.

The appointments with Dr. Reed followed much the same routine. Mat was weighed and we went into an office/exam room and sat in two chairs near the door. We usually didn’t talk much. Mathew had his journal out in order to take notes. I kept myself busy, reading and trying not to worry.

Dr. Reed and his nurse Kathy would come in. Dr. Reed always greeted us and shook hands. He would have printed blood work results to give me since we had already established I wanted to look at all of the numbers and Mathew wanted to talk with the doctor.

The two of them discussed a variety of subjects. Sometimes the cancer. But more often than not, Mathew’s writing, his music, and what he was doing with his time.

Mathew wore quite a few interesting shirts and Dr. Reed would comment on them. One time one of the members of the infectious disease team told Mat, “You have the most interesting T-shirts.”

This particular day, as Dr. Reed was talking to Mathew, his beeper went off. He glanced at the number on it and called an extension. It was the lab. Mathew’s counts were critical.
I’m still amazed.

Blood was drawn approx 8:15 and an hour later they have all the results and the permutations done to calculate the white blood count and are notifying the doctor.

Is everything ok? Mat is not

responding to my texts.

Rec’d May 15

Mat is being admitted. Neutrophils critically

low. Still will have a procedure at 1.
No room yet,
in DRC.

Sent May 15

Where are you in the hospital?

Rec'd May 15

DRC. Same hall as the pharmacy.

Sent May 15

Be there in a minute.

Rec'd May 15

He’s having stent checked right now

Sent May 15

It is blocked again but they can’t do anything

about it because they gave him blood thinner

this morning even though I told them he was

scheduled for a procedure today. Geez.
Sent May 15

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 ...

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...

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 ...

Confections For Cats

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