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Jay Lake
Date: 2013-06-03 05:28
Subject: [cancer] Already struggling with the Regorafenib
Security: Public
Tags:cancer, health, personal, radiantlisa
It's amazing how medications can shape our lives. This is a lesson I've learned over and over again these past five years, and now I'm learning it again. A week ago today I started taking Regorafenib, and I am already struggling with it.

This is oral medication. That makes Regorafenib the first chemo series I haven't taken intravenously. I ingest four pills every morning for three weeks, then I'm off for a week to recover from the side effects. Sort of like how a lot of hormonal birth control is administered.

Wikipedia lists the side effects as follows:
[W]eakness or fatigue, loss of appetite, hand-foot syndrome (also called palmar-plantar erythrodysesthesia), diarrhea, mouth sores (mucositis), weight loss, infection, high blood pressure, and changes in voice volume or quality (dysphonia).

Let's see... In only a week, I have experienced:
  • Weakness or fatigue

  • Loss of appetite

  • Hand-foot syndrome (also called palmar-plantar erythrodysesthesia)

  • Diarrhea [not exactly, but definitely new GI disruptions]

  • Mouth sores (mucositis)

  • Weight loss

  • Infection

  • High blood pressure

  • Changes in voice volume or quality (dysphonia)

Six out of nine ain't bad for the first seven days. Given prior experience, I expect all of these to get worse, likely significantly so.

And hand-foot syndrome unpacks into a number of unpleasant elements. For example, extreme heat sensitivity in my hands and feet, which makes it hard to shower. Already I cannot open the caps on bottles. Last night having appetizers before dinner, Lisa Costello had to shell peanuts for me. Simply gripping my pants to pull them on is painful. We are seriously thinking I cannot wash my hair anymore without help. It hurts to pinch my thumb and forefinger together, for pity's sake.

This is serious business. Try functioning without your hands and feet. I feel like I'm turning into a giant toddler.

As I was putzing around this morning eating my required low-fat breakfast and taking my daily dose of Regorafenib, I found myself wondering if this drug would grow so challenging that I would prefer to stop taking it. Given my current medical situation, that is to say would I literally rather die than put up with what this drug is doing to me? I've never asked myself that question about chemotherapy before.

When you get to the point I'm at with a disease and its mortality, many of your ideas and assumptions change. I am looking at the possibility of Regorafenib changing them again. This makes me unhappy, no matter which direction I try to face.

Fuck cancer.

Post A Comment | 8 Comments | | Flag | Link

User: cathshaffer
Date: 2013-06-03 11:56 (UTC)
Subject: (no subject)
Dammit. I'm so sorry to hear this.
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User: keikaimalu
Date: 2013-06-03 13:12 (UTC)
Subject: (no subject)
Fuck cancer.
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User: joycemocha
Date: 2013-06-03 14:15 (UTC)
Subject: (no subject)
Damnit. I have only one thumb flaring up on me right now, and that's debilitating coupled with my already arthritic hands. I can all-too-clearly imagine the degree of debilitation you're going through. Crap. I am so sorry.

As for the choice--one thing that sticks in my mind from my era of Daily Mass is our parish priest sharing with the Daily Mass community at community prayer time (and it is pretty much its own community within a parish; primarily oldsters, stay-at-home parents, and self-employed devout folks) that a much-beloved parish member had decided not to go through chemo for diminishing returns. It was the first time I'd ever heard about people choosing quality of life over a longer life--until then I'd not thought about people choosing to walk away from chemo.

But--it comes down to dignity, quality of life, and how much you prize sheer survival over quality. It is definitely not an easy choice to be making.
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User: mcjulie
Date: 2013-06-03 14:56 (UTC)
Subject: (no subject)
Fuck cancer.
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User: kshandra
Date: 2013-06-03 16:20 (UTC)
Subject: (no subject)
Keyword:Fuck Cancer
With a rusty chainsaw.
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User: yourbob
Date: 2013-06-03 20:21 (UTC)
Subject: (no subject)
I have no idea if you've explored them, but there are many nifty devices made for people with impaired mobility and such.

You might look into a medical supply store or two and see if there are things that can help.</p>

Stuff as simple as dishwashing gloves that would protect your hands in the shower so you can shampoo.

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User: alumiere
Date: 2013-06-03 20:51 (UTC)
Subject: (no subject)
Fuck cancer indeed.
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User: zentinal
Date: 2013-06-05 03:21 (UTC)
Subject: (no subject)
Fuck Cancer.

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