Mathew's Journey Through DSRCT Continues

I’ve been looking at the pages of texts messages I have and Mathew’s Journal entries for the next few days. I look at it all and it’s a mass of pain, to the hospital, home from the hospital, medical ups and downs and Mathew navigating it all physically and emotionally and I feel like I am trudging through thick cloying mud as I write these blog posts. And I wonder what you, the reader thinks and feels. Does it seem like an endless drudgery of depressing procedures and physical and emotional pain?

Constant, constant constant.

If that is how it comes across, then I have successfully conveyed the feelings of this part of the journey.

And I continue:

From Mathew’s Journal

3-29-14

Wake up nauseous again. Then headed to the bathroom for the gross morning rituals.

The day went by with me sleeping. I have been very tired since my last chemo.

At 12:00 pm I go NPO because tomorrow I go get a port to replace the nuisance of a pic line.

Honestly, though, I can say I am a little scared as the last procedure for the lung catheter was so painful.

I need to change my bandages again and finish up with the antibiotic IV and flush the final pic line.

3-31-14

Excruciating pain is the only way to describe today. It was in my liver port and moves up to my right shoulder. ***(Remember the warning on the Neulasta shot?)

We woke up early this day in order to do everything needed before leaving the house and getting to Moffitt in time for Mathew’s appointment at the IR.

But when Mathew woke up he was in excruciating pain. So as soon as he was ready I said let’s go. I called ahead and was told to go to the DRC as soon as we arrived. They put Mathew in a room and within minutes Dr. Knight was there. Mathew was screaming in pain. She grabbed his hand and put her face close to his and asked him what type of pain and where. Within minutes she had ordered pain meds for him and they were starting to work. Dr. Knight was concerned because this had been the most pain Mathew had been in, to date.

IR to put a port in around 9:00 and at the time they examined the bill bag through CT with contrast and said it was working. By now it started draining again, but the pain is still excruciating.

Dr. Knight helps with pain. Holds my hands and hooks me up to generous amounts of Dilaudid** I did not know how much longer my industrial fortitude would have held out. In fact, it pains me to write about it.

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 ...

A Cancer Poem by Mathew Rodgers 2014

From Mathew’s Journal 4-5-14 “I lie awake in my pain bed metallic noises chirping from my strange computer companion”

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...

Confections For Cats

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