Caregiver Tip: Phone Tree for Information

There is no time to take a breath or relax. There will be no routine, only we haven't realized that at this point. No time to make a plan for keeping everyone in the loop. As I have mentioned before, I needed a lot of help but I didn't know what type of help to ask for and it was constantly changing.

One thing would have been a better way to get information to family, friends, and well-wishers. I didn't have time to figure out a call tree or text message tree. But I am certain if I had asked Dan and Danielle or Diane to work it out for me they would have, I just didn't know to ask.

So that would be my caregiver tip for this post, set up a message delivery system early. Not only were there times when I didn't have time to send or reply to everyone, but there were places at Moffitt where receiving calls or texts was next to impossible.

Texts between me and Diane

Going home this afternoon!!

Sent March 25

Oh wow….very cool! Is there another

chemo treatment this week?

Rec’d March 25

Please recall my caregiver tip from the last post, that when there was an appointment at the Sarcoma Clinic it meant blood work first in order to check that all of Mathew’s counts were up for chemo that same day. At this point, I haven’t figured that out yet, so I tell Diane no chemo, that I believe it is an appointment to go over the treatment plan.

I’m sort of dreading it to be honest.

Always that dose of reality.

Sent March 25

I understand. Do you want

Arpie/me to go w/you. If we can

arrange it? What time is it?

Rec’d arch 25

Because the appointment was on Thursday, Arpie’s day off, all of us were able to make the appointment. In the texts between me and Diane and me and Arpie I give them directions to the Sarcoma Clinic based on how often we had already passed it on the way to Mathew’ numerous procedures.

Texts between me and Diane

We have to be there for blood work at 7:30

and then to the Sarcoma Clinic. The place

we always passed on the 3rd floor going

for x-rays.

Sent March 25

Texts between me and Arpie

Going home this afternoon!!

Sent March 25

Nice! When is the midway treatment?

Rec’d March 25

Don’t know but he has an appointment with

Dr. Reed Thursday morning.

Blood work at 7:30 and then to Sarcoma

Clinic.

I would like to be there at appointment

with Dr. Reed. Please send details.

Rec’d March 25

Yes, I will call you this afternoon and

explain where it is. We walked past it

every time we went for ultrasound,

x-ray, and I.R.

I remember seeing it now that you

mention it.

Rec’d March 25

FYI, how to get to the Sarcoma Clinic at Moffitt Cancer Center.

Go to the Gold Valet which is the entrance where the blood draw lab is, turn right and go to the elevators right before Starbucks (Yep, this would become our routine, blood draw, Starbucks and then Sarcoma Clinic.) Take elevators to the third floor, exit to the left, hallway makes a sharp right turn, follow until you see Sarcoma Clinic on the right.

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...

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