How Am I Feeling?

Posted 31 May 2016

As someone with a serious disease, a question that I’m frequently asked is “how are you feeling?”.

There are many ways to answer this question, of course. Physically or emotionally? The short answer or the long answer? Where is the line before it becomes TMI?

Getting into details of how I feel causes little privacy gremlins in my head to jump up and down. Having gone as far as I already have with this website, however, I don’t see a good reason to stop at a particular level of detail.

When I started writing my cancer blog, my goals in writing as well as my drive to do so all came from wanting to record more of my thoughts for my family and close friends.

I was surprised when one person after another mentioned to me how valuable my cancer story will be for many people. In thinking about how deeply I wanted to go into the details of how I feel, I decided that including details is what makes personal stories both engaging and more valuable to other people.

Of course, not everyone really wants to hear the details. Here’s three different answers — pick the level of detail you want.

The Really Short Answer

I’m doing ok. Not great, but ok.

The Short Answer

I’m doing ok. For the most part, I’m able to do the things I want to do, though my energy level is lower.

For the past few months, I’ve had almost no pain. In recent weeks, however, the pain has come back.

As long as I don’t have a fever and my pain is controlled, I’ve been able to mostly stay in the moment and enjoy life. I have lots of grief moments and scattered hard days, but many great days too.

The Long Answer

I’m doing ok, though my prognosis remains poor. For the most part, I’m able to do the things I want to do, though my energy level is lower.

From mid-December, when my second biliary stent was installed, I had almost no pain until early May. In recent weeks, the pain has increased, and I’m now taking both methadone (an opiate) and dexamethasone (a steroid).

The biliary stent is prone to infection, and I’ve been on antibiotics for some time. Two weeks ago, I started getting moderate fevers and feeling generally worse. We added a second antibiotic, Flagyl, and within a couple days I felt dramatically better.

Now that I’ve been off the one-week course of Flagyl for a week, the same symptoms have come back, and I’ve just restarted the Flagyl for another week.

Nausea continues to be my most persistent side effect from the treatments I’ve had. I think this is due to the radiation treatments, since it came on strongly just as those treatments were ending. It is an annoyance and makes it harder to want to eat, but it is tolerable.

I’ve been able to eat anything I wanted, but in the past month or so it has taken more effort. I need to eat slowly, or my body tells me it isn’t going to swallow anything more. It makes for lots of pauses during meals, but it hasn’t kept me from eating.

Another side effect is numbness in the soles of my feet (peripheral neuropathy). Like the nausea, the neuropathy is annoying but ignorable. This is a side effect from the first round of chemo, which came on after a delay of months.

My emotional state is, in many ways, more under my control that my physical health — which is not to say that taking that control is easy. Focusing on making each day the best it can be and staying present-focused have helped me a great deal.

Next?

How I feel varies greatly from hour to hour, day to day, and week to week. On Thursday, I start a new chemo regimen, and that will add a new set of effects, both positive and negative.