Skip to main content

Mathew's Journal, Making the Best Decisions Based on Precedent

From Mathew’s Journal

3-28-2014

Woke up this morning definitely feeling the effects of the chemo.
I was awoken by mother cleaning and instantly aware of the fact that the room was spinning and my stomach was doing gymnastics.
After the morning routine in the restroom and taking down handfuls of Rx, my grandmother brought me a breakfast of toast and bacon. I told them I didn’t think I could handle the eggs. I’m second guessing the bacon, although surprisingly delicious as well.
Now I am belching incessantly and wondering if I am going to vomit. Eventually, I tend to have a large belch that alleviates most of the pressure making nausea or diarrhea or constipation more bearable.
Had to go to Moffitt to get some shot or another. It was in the same section of the hospital that I had gotten chemo yesterday. Apparently, there had to be a 24-hour gap between chemo and the shot so I had to wait another hour.
I was lucky enough to be put in a room with a bed and used this apparently to take a nap as I have been exhausted and found myself nodding off whenever I was in a seat.
The shot didn’t hurt and we were quickly on the way back. I slept most of the way without realizing I was asleep.


Caregiver tip: My sister Kathleen is not a cook, so my Mom bought a supply of to go containers and when my sister would go over their house to eat dinner, my Mom would send a meal back for Mathew. Or as on this day, she brought him some breakfast. This way, we weren’t shuttling my Mom’s plates back and forth and it kept Mathew’s food from being handled or exposed.

The Neulasta shots are to boost the patient’s white count, sort of like setting the white blood cell factory on overtime in order to prevent infections, due to low white counts.

I see the commercials on T.V. The first one I saw was a woman, who according to the commercial, received her shot because some cancer patients get chemo that is so strong, their immune systems are compromised. In this commercial, this woman, the ‘cancer patient’ gets her shot so she can be home after chemo. So she goes into the family backyard and sits at a table with a group of people and proceeds to eat corn on the cob and lobster, I believe, from a communal table of food.

A few things strike me about these commercials. As Mathew was instructed, when his white count was low and he was at risk of infection (which eventually became a constant), he wasn’t to eat ‘communal food’, which are things like a basket of tortilla chips at a restaurant, from a box of pizza after other people have had their hands in it, a bowl of nuts, or chips….you get the idea. And shellfish was on the list of do not eat.

But, it’s just a commercial. 

So, in that respect, the commercial is funny to me. The other thing is the commercial gives a disclaimer, as is normal for medications, but listen carefully, do not use if you are allergic to Neulasta or Neupogen….and how would someone know they are allergic I wonder.  One of the potential side effects mentioned is a ruptured spleen. 

This is one of those things that normally does much more good than otherwise. One of those things, when the starter pistol goes off with a cancer diagnosis such as Mathew received and everyone, starts running for the patient's life, decisions are made to the best of everyone’s ability using the best information they have available to them and that’s it. There are no do-overs or let’s think about this for a few weeks, no taking it slow or plan for a future event when everything will be addressed. No. Sometimes every decision, every turn can be a life or death decision. You get one go at it and you trust your team or not.


Mathew trusted his team completely and so did I. I still do, but Mathew hoped that by me sharing his journey that we can help someone get a jump on part of their treatment, or give them another idea or way to deal with some aspect of it. Anything to make someone’s run for their life easier, or more successful.

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