Life after cancer

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  • On having a feeding tube

    Catch of The Day at Phoenix City Grill

    My Experience with a Gastronomy Feeding Tube

    For seven or eight months, I relied on a gastronomy feeding tube. While I cannot recall the exact date it was installed—nor have I been able to locate any records—I remember very clearly when it was removed. Before sharing more details about my specific experience, it is useful to describe feeding tubes in general, and mine in particular.

    Types of Feeding Tubes

    There are four main types of feeding tubes. My tube, known as a gastronomy tube (G-tube), connects directly to the stomach through an opening cut in the abdomen at the time of installation. Admittedly, the procedure is not pleasant. However, having a hole in the abdomen and stomach seems less troublesome than the alternative types that reach the stomach or small intestine by passing a tube through the nose or mouth and down the esophagus.

    Additionally, there is the jejunostomy tube (J-tube), which bypasses the stomach and connects directly to the small intestine through a surgically created opening. With all these tubes, nutrients are delivered in liquid form and inserted either with a syringe or a drip mechanism.

    Why I Needed a Feeding Tube

    My feeding tube was installed because cancer treatment dramatically affected my sense of taste. Chemotherapy impacts the taste buds via the salivary glands, while radiation affects both the taste buds directly and the nerves in the treatment area. Since my cancer was esophageal, I suspect radiation was responsible for most of the changes I experienced in taste. This is supported by the fact that, for me, everything tasted like cardboard or had no taste at all. Chemotherapy tends to make food taste metallic. Unfortunately, the effects of chemotherapy last for weeks, but radiation’s impact can persist for months—or may never be fully resolved. It has now been eight months since my treatment ended, and I am still struggling with some food.

    Feeding Methods: Drip vs. Syringe

    At first, my caregivers (in the hospital and rehab) preferred to use a drip mechanism for feeding. I am not sure why they wanted the drip vs a syringe, but using the drip always took longer than an hour, and sometimes even more. The extended feeding times were frustrating because I had to remain attached to a nutrient bag, which needed to be positioned above my stomach, resulting in limited mobility. While still in rehab, I switched to the syringe method, which was much quicker and more convenient.

    The end of the tube

    In December (2025) I had the tube replaced. I went home from the procedure and tested it (by using the Nestle Nutren (1.5 g protein per 250 ml). That was the last time it was used. That was difficult to do because I had to make up the calories and protein that the Nutren was supplying. I had already been supplementing the Nutren with some food (like ice cream, candy and protein drinks -that I detested). To my surprise, the calories were easier than the protein.

    Finally on January 9 (2026) I had the tube removed. A week later I celebrated at Phoenix City Grill with the catch of the Day which is pictured above. I still track calories and protein – AI is great for that task. Along the way I was surprised by my reactions to several foods. The first two foods I noticed that tasted as I remembered were frozen strawberries (as in Dairy Queen sundaes) and root beer (as in Shake Shack root beer floats). Fish is almost always good whereas beef and pork not so much. One last comment, beer is better than wine. For a snob like me, that is very surprising.

    Just removed!

  • It’s a mystery to me.

    In my front yard have a young saguaro cactus that has an insect impaled on one of the needles. Now, how the insect came to impaled I have not a clue. Still, there it is slowly being desiccated in the dry desert air. Did a sudden gust of wind blow it onto the needle? Did the insect simply misjudge the distance? Maybe the point of the needle is too small to register in its vision. It appears that the needle pierced the wing very close to the insect’s abdomen. Whatever happened is a mystery.

    The universe and our lives are filled with mysteries. Some mysteries we try to explain by invoking the odds of something transpiring. An example of that would be explaining my getting pneumonia after radiation treatment by explaining that I aspirated food into my lungs. Aspiration pneumonia is fairly common after treatment for esophageal cancer (20 % to 25 %, depending on the mechanism). Then there is “Silent Aspiration” which is just having food enter the lungs with no cough or immediate distress and is much more likely.

    OK, so for the first time, I can buy aspiration. But getting pneumonia a second time seven months after treatment? My first thoughts about the re-occurrence was that I picked it up because I wasn’t wearing a mask (shades of the COVID pandemic). Or maybe it was still lurking deep inside of my lungs. Or maybe I did aspirate food into my lungs again. Just like the impaled insect, it is a mystery to me.

    The good news is that I am getting better at understanding when there is something amiss. This time I went to the ER immediately and only spent two nights in the hospital. Now I wear a mask to work (where there are many homeless people) and other places where there are crowds. My oncologist referred me to a speech therapist (not for talking but for finding out if I am swallowing correctly). I’ll go. I am also getting a CT scan to see if there is anything lurking in my lungs. It may be a mystery, but I want the best odds I can get.

  • There is nothing I can do about it now

    Going to work at Justa Center in the morning, I park under a tree across the street from the entrance of a parking facility for state (of Arizona) employees. The facility has roll down gates in addition to the traffic barriers which prevent unauthorized access. The roll down gates are closed at night and on weekends to prevent access by foot.

    Before last March and my enforced idleness due to my near-death experience, the gates rolled up at precisely 6:00 am. I marveled at the synchronization of time that this entailed. The gates, my cell phone and car radio all had the exact same time. After my return to work in October, I noticed that the gates were still closed after 6:00 am. I suspect that the time is now 6:30 am but haven’t validated this time yet.

    After noting the change, I came to the realization that the world outside of me had continued without me. The world had made changes during the six months that I had been concerned with my own affairs. I also realized that I had changed. My body had changed from the stresses of chemo, radiation and pneumonia; my thinking had also changed from my experiences.

    I view my life much differently than I did before the diagnosis. I am a human. As a human I have some good, some bad and much in between. Willie Nelson has a song, “There is nothing I can do about it now” that sums up my thoughts about my life. The closing stanza puts it eloquently:

    “I’m forgiving everything that forgiveness will allow
    And there’s nothing I can do about it now.”

    I have also come to question the meaning of human life in general. That is something that never occurred to me before. When I come to a conclusion about it I will let you know.

  • Rehab lesson

    I had difficulties in my stays (two to be exact) in the hospital for pneumonia after treatment for cancer. Staying in a hospital is always unsettling with being woken up at unusual hours and with visits (always unscheduled) from doctors, dieticians, case managers, nurses delivering medications and the like.

    In my case I was being fed via a feeding tube, and this necessitated visits to be fed. I was also connected to IVs for hours at a stretch.

    All of that that was annoying enough, but the worst was having the bed alarmed because I was labeled “Fall Risk”. This meant that I had to press the “Nurse” button, wait for a response and then wait for someone to come to the room to turn the alarm off and help with whatever I need to do – usually go to the lavatory. I am not sure why I was a Fall Risk. Maybe just policy for patients my age (83). It was most irksome and the thing I disliked about the hospital the most.

    The hospital would not release me to my home, only to a rehab facility. That caused a delay as my insurance needed to approve my choice. But at long last I was transported to a rehab facility which eliminated Fall Risk and made existence more pleasant.

    Of course, I still needed the medications, IVs and feedings via the feeding tube on the schedule of those providing which meant that I had an unsettled schedule which was still annoying. And that is where I received the most important lesson of my recovery.

    One day I fell asleep before I got my third feeding (via the tube) of the day. Whoever it was that was responsible for the feeding did not wake me up. When I did wake up sometime after midnight, I pressed the “help” button. A nurse responded and I complained at length when he told me that he couldn’t give me the feeding.

    His response was that yes, I should have been woken up but that they (the facility) were not responsible for my recovery. The person that was responsible for my recovery was me.

    It took me a long time to get back to sleep.

  • Thanksgiving

    I have a lot to be thankful for today. I’ll start with just being alive.

    I was diagnosed with esophageal cancer in March (2025). Underwent chemo and radiation treatment in May. Developed pneumonia and then sepsis in June and was then hospitalized.

    While I was in the hospital some doctors were in favor of sending me to hospice. My oncologist said no and made it stick. Did I mention that she was voted (by her peers) Best Oncologist in Phoenix. No? She gets my vote also. She is the best!

    That was about the time she told me, “Well then you can just go to hospice and then die!”. I think I had been complaining about some aspects of recovery being so difficult.

    I call that my near-death experience. I survived and here it is Thanksgiving Day.

    The feast for the day (served in 3 servings) and new dinnerware.

    I never liked turkey any way.

    I am thankful.