Skip to main content

The Biliary Drain Continues to be Mathew's Achilles Heel During Treatment

Up until this point, everything in Mathew’s journal, my notes, and texts have coincided, but shortly after this point, there are two levels of activity. The things that happened during this time medically and with everyone around Mathew and Mathew’s thoughts and feelings. This is what happens when he has a very high fever or an infection.

So I will try to keep the two clear for the next few blog posts.

I’ve mentioned before that in Mathew’s journal, he kept pages of “ins and outs”. 
On 4-1-14 he mentions
“bili bag started draining again yesterday, but the nurses are keeping track of the measurements.

4-1-14  “Bili bag keeps filling up rapidly. Maybe that has to do with the clog and the pain. Or maybe there is an infection in the bill bag. **


Mathew’s Journal

4-2-14

A lot of times I look in the bathroom mirror and ask “What happened to my body?”
Before I get into bed I notice that my sheets are filled with my thinning hair.

Notes with Dr. Knight
  • bili drains get clogged all the time.
  • sometimes they get caught against the wall.
  • cultures take 48 hours usually.
What are the results of the CT and x-ray?

We have increased pain because we have an enlarged spleen. 17.6 to 18.8 spleen.
stretching of capsule amongst spleen and liver.
Spasmodic pain related to bili pain……biliary colic.

If there is an infection it will reveal itself.

Infiltrative tumor with its tendrils on nerves.  *****



*******Mathew had been in a lot of pain before his diagnosis and continued to be in enormous pain throughout his treatment. At first, it seemed obvious, the tumor had invaded so much of his abdominal cavity but even as it shrunk, there were still tendrils affecting those nerves and there was probably nerve damage from the tumor.

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