Skip to main content

First VDC Chemotherapy for a Rare Soft Tissue Sarcoma

First VDC outpatient chemo

The routine for this was to leave our home early (it was a 40-minute drive), go to the blood draw area to have blood work, then to the Sarcoma Clinic to see Dr. Reed, and then to the infusion center at Moffitt. There was usually a wait in the very large waiting room there. Then Mathew would be called back and pre-chemo meds would start, then the chemo, all of which took hours. 

This was the first time, we were told it would possibly take as long as 8 hours or more. We had no preconceptions, there was no way to compare the 5-day inpatient I.E. chemo to the VDC.

Each patient had a small area, the chair they sat in, a chair for family or caretakers, and room for nurses, and I.V. poles. Like a miniature hospital room. 

This is when I started taking a rolling bag to accommodate the Monkey Bag, Mat’s journal, a book for me, snacks and my laptop.  At this time, Mathew still needed a wheelchair. 


From Mathew’s Journal

I take notes on a video of chemo
An old lady next to me laughs
      she mumbles something about already having had chemo.
-she’s had chemo for over 41 years.
The first cancer was when (illegible).
  I’d be more interested is she had survived that long with a Sarcoma.
My writing takes place in a familiar space.
Hardwood floors, large green chairs, monitors everywhere.


I remember that woman. (It turns out she was a customer of Mathew’s Dad in Lakeland). Small world. She was telling us that she had cancer many years ago and as a result of the chemo, she developed another cancer and now received a small dose of chemo once a month to keep it in check. This was encouraging, but as Mathew wrote….compared to Sarcoma, it’s apples and oranges.


Mathew watched the required video, wrote a bit and then shut out the world as best as he could.



Comments

Popular posts from this blog

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 ...

Thoracentesis to Remove Fluid on the Lung

2-28-15   From the Notebook Fluid on right side of lung Needs to be drained, done from the back Can be done bedside Send out for testing CAUSE? could be a bodily reaction - most likely this because fluid wasn’t present when he arrived or could be tumor has entered the lung. Mathew had been complaining about his right shoulder hurting (this was from the fluid on his lung). He thought it was from the previous October when he was taken by ambulance from work when they thought he was having seizures. He wondered if the EMT's had hurt his shoulder when restraining him. He will reference this in his music and writing. A local oncologist is brought in who says he will be starting Mathew’s treatment. More news on the diagnosis: -Neg for lymphoma -not traditional carcinoma -uncommon sarcoma -pancreas -looking for rare cancers Again my ignorance, I thought that a rare cancer would get more results. Backward thinking. Here is a photo of t...