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.

Comments

Popular posts from this blog

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