Saturday, November 9, 2013


Two more milestones reached yesterday, one small and one big.

We were headed to Dana-Farber and we still had a bunch of liquid meds on the "cancer counter" - a part of our kitchen counter that has been devoted to cancer since June. I'm no longer taking any medications, so it was time to get rid of them. It is not recommended to flush prescription medicines down the toilet or dispose of them in the garbage. And community drug turn-in days (of which there is one this weekend in our town) don't accept liquids. But the Dana-Farber pharmacy is happy to take meds back and dispose of them properly, so we rounded them up and reclaimed the counter for normal use.

This photo was actually taken after some meds had already been removed. This is probably about 2/3 of the number of meds that were there at the peak.

I've been noticing the empty counter every time I walk by today. Another sign of progress.

The other, larger milestone is that I had my feeding tube removed!

Here's a photo of the extra appendage I've had for the past four and a half months.

Some head and neck cancer patients choose to undergo treatment without a feeding tube. Michael Douglas did it. But he also lost almost twice as much weight as I did - and I lost more than enough.

Bob, a fellow patient that we saw most days at radiation treatment, also opted not to have a feeding tube. He lived on smoothies. But I can't imagine trying to swallow several smoothies a day during the worst of treatment. If you recall, I didn't put anything in my mouth for almost two months. I know Bob had significant difficulty toward the end.

There is only a small window of time at the very start of treatment in which one can have the tube placed, since it is a surgical procedure. One's immune system takes a dive a few days after the first dose of chemotherapy and then surgery is out of the question except in an emergency. There would be too much risk of infection. So you can't change your mind later.

I was very grateful for my tube. After hearing what treatment would be like I never even entertained the idea of forgoing a tube.

I had read about removal back around the time I had my tube placed. I was curious how they remove it and was surprised to learn that they literally just pull it out!

Here is a photo of what the whole feeding tube looks like. The bar-shaped piece sat outside my stomach and is a stop to keep too much of the tube from passing into the stomach. The round collar at the end is a "bumper" that sits inside the stomach and keeps the tube from coming out. It is made of a soft rubbery plastic or silicone.

When the tube was first placed, the bar-shaped stop was snugged up against the skin to apply pressure and keep the wound from bleeding. A few days after placement NP Kate loosened it a little (moved the stop father from the skin). Once the hole (formally called a stoma) was healed around the tube, I could slide the tube in and out about half an inch or so. No part of the tube ever adhered to any part of me.

I found it surprising that such a device wouldn't leak. Apparently the stomach muscle is strong and compressed enough to provide a seal. The stoma did produce a very small amount of crusty stuff every few days. It was easily removed with a Q-tip in the shower.

But getting back to removal... NP Kate removed it yesterday using the standard technique: grasp the tube and pull. The soft bumper collapses enough to pass through the stoma.

I had read that it stings for a minute but then subsides. That's what happened. As NP Kate warned me, it's quite jarring. I was lying on my back on a exam table. Wonderful Wife says my feet flew up in the air.

NP Kate applied a fair bit of pressure immediately afterward to stop any bleeding (there wasn't much). The pressure was more painful than the direct aftermath of removal.

She told us that by the time we got to the parking garage the stomach wall would have closed and I wouldn't be ejecting stomach contents through the stoma. The skin takes longer to heal.

My stomach was pretty sore for the rest of the day. It felt like I had done too many sit-ups. But when I woke up this morning the pain was substantially reduced. Today I have only really noticed it when I cough or sneeze.

After 24 hours it was OK to remove the dressing and take a shower. I was worried what I'd find under the dressing but it was almost nothing. The stoma is partially collapsed and has a scab in the center. No big deal.

I had become accustomed to having the tube sticking out of me, but it's nice to have it gone. For example, when drying off after a shower I had to be careful not to entangle the towel in the tube and accidentally pull on it. Now I can just dry off normally.

In the photo of me above you can see a large white clamp on the tube. That's how one keeps the stomach contents in the stomach. I forgot a couple of times and left it unclamped while hooking up or unhooking food, and if I coughed during that time stuff would squirt out of the the tube. It only had to happen one or twice and the lesson was well learned.

The clamp was also the only rigid part of the tube, and it had sharp-ish edges and corners on it. That prevented me from lying on my stomach, which happens to be my favorite sleeping position. I look forward to sleeping on my stomach again!

So I've passed one more milestone on my way back to normalcy.

1 comment:

  1. Wow - you look great! Thanks for posting the picture and happy to hear the tube is out.