PEG. (It will come back to you.)

One of the enduring peculiarities of cancer treatment is the way it combines the most advanced modern science and great intellectual achievement with pre-human barbarity and heartless practical measures. One of the first times I encountered that was back in the 80s, when one of the chemo treatment regimes I had was called “leucovorin rescue.” In that technique, the patient is administered a lethal dose of a drug that chemically masquerades as a vital cell nutrient. Cancer cells, with their higher metabolism, greedily drink in the bogus chemical, and fall over dead when they try to use it, and then, to keep the rest of the patient from falling over dead, they flood the body with another drug which CAN be used as the expected nutrient, literally the antidote, and the good cells go on to live.

Another one of these high-tech barbarisms explains why I spent last night in the hospital.

Tomorrow I begin radiation treatments. Highly educated people have spent the last two weeks designing complex computerized targeting routines to drive an incredibly complex machine and align multiple beams of radiation with millimeter precision to destroy the cancerous cells in my mouth. That said, it is completely expected that this treatment will so trash the mucous membranes of my mouth that I will be unable to eat and perhaps not even drink, and I will have to continue in that state for weeks and weeks as I undergo daily doses of radiation.

But there is a well-established way to keep someone who can’t use their mouth fed and nourished for long periods of time. And, as readers of our previous cancer blog and those who knew us in 2004 know, we have a lot of experience with it. Following my 2004 surgery, it was months before I had learned how to swallow again. I spent most of that year getting my nourishment from a feeding tube placed into my stomach using percutaneous endoscopic gastrostomy, or PEG.

(Yes, Facebook fans, there was a reason I posted a link to a Steely Dan song that was going through my head yesterday. I was in the waiting room of the UWMC Digestive Diseases department trying to prepare emotionally for the process. That was no trivial undertaking.)

My memories of the 2004 procedure to place the PEG, and the adjustment to using it, rank among the most traumatic memories of my life. (Yes, that is saying quite a lot.) It was placed in the days shortly after my major head and neck surgery, when I was barely able to communicate, and I was on a variety of powerful drugs. The team in the Interventional Radiology department misjudged the interaction of the opiate painkillers I was on and the sedatives and anesthetic they were using to place the PEG. I was far, far too conscious, and in too much pain, but not able to effectively communicate that. I was also not thinking clearly enough to do much more than hurt, struggle and fail to be understood, and be afraid, imprinting a horrible memory for a lifetime.

Other bad PEG memories got logged later, when I was back in my hospital room. The summary of that experience is in the old blog. As we would later learn, my body, trained by years of healthy eating and whole foods, reacted badly to having highly synthetic feeding tube formula pumped into my stomach. That pain, combined with my tangled, drugged but painful memories of the placement procedure, and my memory that the death of one of my elderly grandmothers had been hastened by a misplaced feeding tube, started me panicking in the middle of the night. An awful, awful night, that was.

So, despite all my powers of positive thinking, and ability to self-coach and think of all that was different, I was having trouble staying calm while waiting to be called back for my procedure.

The good news is that this time around, the entire process went better, and went according to the plan. I got the tube placed late in the afternoon, then spent the night in a room at the hospital so I could be monitored, and they could check the tube in the morning before releasing me.

Of course it helped that I went into it fit and functioning, not recovering from major surgery. We were able to have a preliminary meeting with the doctors, resident Jarrad Scarlett, MD, PhD (!) and Dr. Kuver, from the Digestive Diseases team — the other team in the hospital that does PEGs. They listened calmly to my story, and showed great care in making sure that I’d have a better experience this time. They asked careful questions about how much pain medication I’d taken, and when, and even suggested that they could reschedule the procedure to have a full anesthesiologist available, if I wanted. I felt like I was in good careful hands. (And, though he appeared to be no relation to the Captain, I did feel that I could count on Dr. Scarlett to protect me from Mysterons.)

In the event, I remember being wheeled into the procedure room, and getting all the monitors hooked up, and not really anything after the nurse said she was starting the drugs. Nice. The other good thing about this time around is that we don’t actually have to start using the PEG tube yet. I’m still able to eat and drink by mouth.

The night in the hospital was also nicely routine. Kimberly left after accompanying me to the room and staying through the “clear liquid” diet I was allowed for dinner. After that I took a nap, and then awoke with a great idea. Normally when we are apart we call each other to say good night. But I had brought my iPad with me, and my great idea was that I could use FaceTime to talk to and SEE Kimberly. (Yeah, this idea would have occurred to my teenage niece in a split-second – I’m old. Sue me.)

Following a nice FaceTime chat, I went back to sleep, lulled to sleep as usual by the sound of the podcast of As It Happens from the CBC radio. I had a quiet night, and in the morning my PEG checked out OK. Dr. Scarlett came by and did some minor adjustments, pronounced it good, and I was able to go home. There is some lingering pain at the entry site, which will fade as it heals up and is no worse than the other parts of me that are hurting in my mouth.

Before we left, we met with the young woman who is the dietician representing the formula supply service, but I’ll skip those details until we start actually using the new tube.

So, the morning went great, and we had enough time to get home and recharge before returning to UWMC in the late afternoon for the “dress rehearsal” of my radiation treatments. Which will be covered in a later post, not tonight.

7 thoughts on “PEG. (It will come back to you.)

  1. So glad to hear it went so well, and was so much easier than last time! May the greater ease continue throughout this entire process – hoping and praying that for you both.

  2. Dr. Scarlett in the hospital with a feeding tube….. Glad this was a happy story. You guys are amazing and my heros.

  3. Thanks for explaining the Steely Dan reference; I had no idea what it was trying to allude to yesterday.

    It’s great to hear that this PEG experience went so much better. One of the moments from your last go-around that still makes me smile and admire your spirit was the day I came over to visit a couple of months after surgery. It was a beautiful day and we were sitting outdoors, and feeding time arose. At that point, you got the can of liquid nutrients out, started pouring, and said, “Why yes, today’s meal is from Taco Bell!” and proceeded to give a Howard Cosell level of description of the crunchiness of the tostada and spiciness of the hot sauce as the fluid went in the tube.

    I’m seeing you keep that same spirit, and it’s one of the reasons that you’ve long been one of my heroes.

  4. Having endured a tiny version of that–incompletely sedated for wisdom teeth extraction–I’m here to testify. What Paul described is one of the most harrowing, frustrating, frightening things that can happen in a medical setting that’s supposed to be therapeutic.

    I’m not sure why I didn’t put it together back then that your subsequent troubles with the PEG were also probably tied to the trauma of its insertion–as if all the rest hadn’t been hard enough. Let this be just the first of many ways this PEG goes better, Paul.

  5. Paul, you rock.

    Great to hear these procedures are largely going as they should. It really shows the value of a positive spirit and consumer knowledge, both of which you have in abundance. I hope things go just as smoothly over the next few weeks.

    I couldn’t help but feel a flash of anger about your prior experiences which I was unaware of (and some of your current ones). It resonated with things I’ve seen. What makes seemingly rational, talented, educated people forget about the human being in the middle of everything? Some perplexing aspect of human nature I will never understand.

    Take care my man.

  6. And to echo what others have said … you are a real hero to me.

    Thank you for sharing your world like this. Amid everything else going on, it takes a ton of energy and courage to write things up, the good and the bad. Very well written also.

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