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.

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 why it has hit

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 by loved ones

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 any big pr

Confections For Cats

Search This Blog