GI tract goes rogue, NY trip canceled

Digory with cone of shame, after getting neutered yesterday.

This was the big week: son Brian and I were all set to fly to NY Tuesday and spend two nights and three days there. Brian loves photography and food–he was excited. But then my GI tract went rogue.

The Keytruda-induced GI problems I’d had for a year and a half, for which I’ve been taking steroids for over a year, were suddenly replaced with the opposite problem, and I was again dealing with the issue I faced for my first year and a half of treatment. But there were complications, primarily because I didn’t switch out my GI meds quickly enough. It got to the point where I was spending excruciating hours in the bathroom. Want details? No, you don’t.

This all started last Thursday, nearly a week ago. I talked to many nurses–insurance nurse line, PCP nurse, oncology nurse–and finally I went to see my PCP’s PA. Problem not resolved.

I also had my first fall. I’d gone into the bathroom to weigh myself. When I stepped off the scale, I remember leaning against the wall. The next thing I knew, I was on the floor. I hit my head but not hard. No bruises or bleeding. Still it is a milestone I’d preferred to have deferred but now it has occurred. Time to be slower and more deliberate about even simple household movements.

I was able to schedule an appointment Monday with my onco’s nurse practitioner (who is excellent–always happy to see her). She ordered up a CT scan with contrast that afternoon, to look at both my liver (which is still all messed up) and my colon, which is only recently recalcitrant.

In the appointment, I asked the NP if I should I go to New York the next morning. She recommended against it. In any case, I couldn’t imagine traveling given my GI issues and how entirely fatigued I was. I wouldn’t have been able to make memories with Brian if all I could do is stay in the hotel room while he went out to explore on his own. So we canceled. The airline (thank you, Delta!) charged no cancellation fee because it was for a medical reason. They just asked for the name and phone number of my oncologist. I was surprised and delighted.

Monday night, I was again suffering in the bathroom for over an hour. I decided I would go to the emergency room the next day if there was no improvement. Tuesday morning, the NP called–on her day off! She said the CT scan didn’t show anything with the liver they could address. Only cancer lesions, which were getting larger. Lymph nodes in the area also getting larger. Colon looked “full.”

I asked her if I should go to the ER for relief. She said try a certain over-the-counter product first, and if it didn’t work, then go to the ER. The OTC product Liz had already bought for me a few days earlier. But I didn’t take her advice and try it as no medical person had suggested it. Until Tuesday morning. So I tried it. Magic. I had immediate and lasting relief. I was so happy! I almost expected to go back to feeling normal, but of course my normal right now is a new normal where I am extra fatigued most of the time, probably from the liver issues or something else related to the clinical trial drug. Even so, it was a big improvement. Many prayed for me–thank you! And Liz has been very helpful in caring for me during my temporary invalidism.

When canceling this week’s trip, I worried I would get kicked out of the clinical trial. But they assured me they wouldn’t kick me out. Another relief.

I don’t know if or when Brian and I will get to see NY together. I would love to. But I have to feel consistently better before I would plan anything like that again. And my planning window is very short now. I can’t plan months or weeks or even (sometimes) days ahead.

My health is too unpredictable. I don’t know what’s going on with my liver, and I haven’t heard of anything they can do for it. All they’ve offered is some additional chemo (Mitoxantrone) that adds no overall survival benefit, just a longer period of pain avoidance. Is it worth it for the chemo side effects? Not sure. My other option might be hospice.

I’m feeling close to the end of the line with treatments. My current clinical trial, if it’s helping, must be doing so very surreptitiously. My cancer lesions are growing, my liver is sick, and my PSA is rising quickly. I feel worse, not better. My guess is it isn’t helping. I hope I will be proven wrong when I’m assessed at the end of July. But if I’m right–that it is not helping–then what is next? I’ve already decided I can’t travel for clinical trials any more–it’s just too exhausting. And some of the more interesting trials would now exclude me because of my liver enzyme elevations.

So I live a day at a time, sometimes in pain and exhaustion, sometimes with more strength like tonight, when I walked Gibbie for seven tenths of a mile at dusk. I spent the day in bed until 2:30 in the afternoon, but by dusk, I felt I could do that for him. He needs the exercise, especially since his usual playfellow Digory just got neutered and is ensconced in a cone of shame.

When I was awake last night in the wee hours, I wrote another poem. Not a very cheerful one, but it captures how I feel these days.

Living’s the Thing

Living’s the thing to do
When you are alive. Fight on,
Warrior strong, against
Harbingers of death–
Incurable illness, lacerations
Of old age or unsound mind,
Wars and rumors of wars,
Accidents with big machines
Or small pills misdirected
Negligently. Fight on.
Don’t give up or in. Don’t flag
In the battle because living’s
The thing to do
When you are alive.

When is dying the thing to do?

–Mark Notess, 2 AM, 26 June 2019

6 Replies to “GI tract goes rogue, NY trip canceled”

  1. I like your poem. The Insight Timer app helps me when I can’t sleep, but only because I can’t write poems at all 😉

    Sorry you were feeling so unwell that you had to cancel your trip to NY. Feel better. NY awaits you.

  2. The teacher in me, and former debate coach, wants to ask for definitions of living and dying. Are we always doing both at the same time, anyway?
    I’m grateful you found OTC relief.

  3. Thank you for sharing. Praying for answers for you. Have you considered Smooth Move tea daily? It is very gentle on the system. Ask the PA for taking it. It has senna in it. Prayers for you for answers, clarity, and to feel better!

  4. Beautiful poem, Mark. Amazing that you can be poetic and philosophical when you are feeling as you do and are confronting this huge event in your life. I can’t tell you how much I admire your strength for sharing all of this with your friends. My best wishes to you and Liz always.

  5. The poem is great. In my younger years, poems were written in the wee morning, thankfully not for the same reason.
    Continued prayers for strength. You continue to amaze me.

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