Discharge Preparation Begins, First Discharge from Moffitt

The last few days of chemo and preparing for discharge was a coordinated effort.

I will cover a lot of this information through text messages.

Several things had to happen:

-Mathew needed a lung drain

-For his medications to be changed from IV to pills

-Discharge information for

home health care

insurance

and co-pays

The people involved in all of this was Mathew, His Dad Arpie, Stepmom Diane, myself and Debra Bock RN

Texts Between Myself and Arpie

Did I catch Diane before she left?? I

am going to stay evening and night.

Sent March 15

I will need to go home for a few hours

tomorrow to clean Mat’s room and bathroom.

Apparently, I also need to wash the cats!!!

Sent March 15

We will make it happen.

Rec’d March 15

If I can be relieved this afternoon from 1 to 7

that would help a lot then I will come

back and spend the night.

Sent March 16

Maybe a little after 1 but otherwise

should be no problem.

Rec’d March 16

Okay good.

Sent March 16

Diane said Mat is not being released

tomorrow. Russell goes back to school

and me back to work, amounts to

availability issues. What do you need

to try and work out to help you with

this? We need to advance plan.

Rec’d March 16

I can cover hospital no problem. plus

Carlos is on Spring Break and gets off

of work by 2:30 ppm Mondays and

1:30 Tuesdays. At some point you will

need to go confirm insurance here and

we can go to pharmacy here for meds.

I have $250.00

Sent March 16

Are we going to be able to come see Mat

at your house?

Rec’d March 16

Of course, he will be at Kathleen’s.

He will have two bedrooms (one is already full

of his stuff), his own bathroom and a large

livingroom all to himself.

Sent March 16

Will you be with him there? Will he be okay?

Rec’d March 16

Yes, I plan on being with him most of the

time other than if I need to run errands, then

my Mom can sit with him and I have a

friend who is a retired nurse who has offered

to help.

Sent March 16

In fact, if you ever want to come up and stay

the night, there is his couch and the chaise to

sleep on. I am assuming we will need

someone with him around the clock, most of the

time.

Sent March 16

I’m hoping as the cancer shrinks some of his problems

will get better. The doctor told him this morning that

the cancer should shrink in the next few weeks.

Sent March 16

One thing about him being home I have plenty

of people who can run errands to the grocery

store or anything else.

Sent March 16

***A note about the logistics of everyone involved. Mathew and I lived in Dade City, Florida….we were 35 miles from Moffitt Cancer Center. The drive was surface roads.

Mathew’s Dad and Stepmom (Arpie and Diane) and his brother Russell, lived in Brandon, Florida. East of Tampa, approx 15 miles away, cross-city traffic conditions. And Brandon is 33 miles from Dade City. Dade City, Brandon, and Moffitt form a triangle.

Mathew used to say, he had good Karma because he was so close to Moffitt that to have Desmoplastic Small Round Cell Sarcoma and not be close to, or able to get somewhere for treatment would be tragic.

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 ...

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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