Skip to main content

Home Again, Mathew's Thoughts and Fears

With the recent discharge from Moffitt, comes a new list of medications, and a new schedule. But I have the spreadsheet I had made and it isn’t as overwhelming as it was the first time. There is still the evening routine of the Pleurx lung drain, bill drain care and so on. 

Mathew wants a watch cap to wear while he is bald and to keep his head warm. In Florida, March is already Spring and watch caps aren’t easily found. He would prefer one from his Alma Mater, St Leo University. We never did find one of those colors.


Texts between me and Mathew

Do you know where my beanie hat is?
Rec’d March 25

No, must be there somewhere. Look in
bedroom.
Sent March 25

You’ll have to find it. Took it to
hospital.
Rec’d March 25

Ok
Sent March 25

Also, can’t find alcohol wipes.
Rec’d March 25


Look in box in bedroom.
Sent March 25

K. Fell down, feeling weak.
Don’t know why. Sore maybe
from car ride. Take care of
things soon.
Rec’d March 25


Sit down and relax.
Sent March 25

Yeah.
Rec’d March 25
As in all of our lives, there is the external world and our internal worlds. On the same day Mathew and I exchanged these texts, he also wrote in his journal.

From Mathew’s Journal

3-25-14

Got home again from the hospital.
I can’t say that I’m not afraid to end up
back there. But my ANC count jumped up
to 1000 from 100.

  - I felt so weak when my count was low,
I don’t want to feel that way again.

It’s probably unavoidable with the next round.
Taking medicine, body needs medicine
  Bathroom routine  takes so long, wipe down everything 

  disinfect everything.
Labels:

Comments

Post a Comment

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...
Post a Comment
Read more

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 ...
Post a Comment
Read more

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...
Post a Comment
Read more