“Road to Recovery” Provides Rides to Treatments

The American Cancer Society’s Road to Recovery program was the most incredibly helpful service for us.

John thought he would be able to drive himself to his daily radiation treatments. And, for the first week, he could.

We live 40 miles from the cancer center that housed the recommended specialized radiation therapy machine. The machine had only been in use for two weeks, and John’s treatments were long– sometimes he spent as long as 50 minutes on the table, strapped down in his mask, while they precisely calibrated the machine to focus on the tiny lesion on the back of his tongue.

At the end of his first week of radiation John had his first chemotherapy infusion, done overnight in the hospital in order to keep him hydrated to protect his kidneys. He sailed through it, but the next day when he got home very strange things began to happen. I won’t go into the details here because first, I don’t want to scare anyone and second, the visual side effects John encountered happen in less than 1% of people getting Cisplatin. Driving was out of the question for him, and I was working full time covering the practice for both of us.

We had plenty of friends who were ready to help John with rides, but none of them lived in our town. This meant someone would have to drive up the hill from Chico, pick John up, drive him the 40 miles back to the Cancer Center in Chico, bring him back home, and then drive back to Chico. It was just too much to ask people to do every week day for six weeks.

On top of this, John was the first person to receive a new radiation protocol. On Thursdays he was getting two radiation treatments, 7 hours apart. This meant two trips to Chico on Thursdays.

This is where the incredible Road to Recovery program kicked in for us.

The American Cancer Society matches up volunteer drivers with cancer patients who need rides to their treatments. The volunteer picks up the patient in their own car. I really doubted they would be able to find drivers for us who would be willing to take up to two hours to take John to Chico, wait while he had his 30-50 minute session, and drive him back.

But they did.

I called the Road to Recovery Program at 1-800-227-2345. Their requirements were few.

First, they needed a week’s notice to coordinate volunteers.

Second, the patient must be ambulatory, meaning they must be able to get in and out of a car by themselves.

Third, they can’t drive patients later than 5:30 pm, during American Cancer Society hours. So I did call on friends to drive John to and from his Thursday evening treatments.

I gave them John’s schedule, and a few days later they sent me a calendar print out with the names of John’s volunteer drivers filled in. They weren’t able to fill in every single day, but they did fill in as often as four days a week some weeks. This made it much easier for me to ask friends to fill in the remaining trips.

John’s volunteer driver called him the night before to get directions and to confirm what time they should pick him up. Each of his drivers refused any compensation for gasoline and were beyond happy to be able to provide this service.

I kept a whiteboard in the kitchen with the names and numbers of friends and volunteers, and every day I would write in big red letters, YOUR DRIVER TODAY IS _____.

When our lives get more back to normal I’ll be signing on as a volunteer for this incredible service. It will feel great to give back!


In addition to the Road to Recovery service, the American Cancer Society also helps with your own gasoline expenses. All you have to do is keep a mileage log of all medical-related trips, and the Cancer Society reimburses you so many cents per mile in the form of a debit card, for use only at gas stations. Because all of John’s doctors and providers were at least 40 miles away, and because he needed physical therapy after he healed up from his treatments (by now he was able to drive himself again), and because gas was over $4.00 a gallon, these gasoline debit cards were extremely helpful.


PEG Tube Recipes (in Colors of the Rainbow!)

Go for the colors of the rainbow!

One of the great advantages of the PEG tube is that you don’t have to concern yourself with how your recipes taste.  This means you can get an amazing variety of foods through it!


Before using anything but canned formulas like Ensure, be sure to read this excellent blog, You Start With a Tube: Blenderized diet, tube feeding and related stuff.

Also, make sure you are using the right kind of blender.  See my post, It Starts With the Right Blender.

I went with five basic colors for smoothies, based on the Five Elements in Traditional Chinese Medicine.  Why?  Because each color nourishes a particular organ system, leading to a balanced diet.   After all, it just makes sense that if you vary the color of the food every day, over the course of 5 days you’re going to be including all essential nutrients.

Besides, it didn’t hurt my spirits or his to introduce a little playfulness to the process. With each recipe add small amounts of each ingredient until your blender is full.

Don’t worry if you can’t find some of the ingredients….this is just intended to give you some ideas.  Improvise!

TIP: Some ingredients you will ALWAYS use, like a scoop of protein powder along with fish oils, flax oils, and fresh ginger.  Your base liquid consists of whole milk, Ensure, or Boost Plus.  Don’t just use fruits– also use vegetables and grains as well.  After that, think color!


Purple/red cabbage

Frozen blueberries

1 apple

1 slice ginger (great for digestion)

1/2 lime, seeds and pith included

1 teaspoon flax oil

1 teaspoon fish oil (or 3 fish oil capsules, oil squeezed out of capsules)

1/4 cup coconut milk

1 teaspoon liquid acidophilis

1 cup whole milk

1 packet Instant Breakfast

1 scoop protein powder*

1 Ensure or Boost plus

Pulse twice for 15 seconds, then blend twice on highest setting for 50 seconds.


1 beet root

1/2 bell pepper

1/2 red apple


Frozen raspberries, frozen strawberries, or Gouqizi

1 scoop protein powder

fish oils

flax oil’

1/4 cup coconut milk

1 cup whole milk

1 can Ensure Plus or Boost plus

Pulse twice for 15 seconds, then blend twice on highest setting for 50 seconds.

This can be found in cans in the Asian or Thai section of your supermarket..


1 cup whole milk

1/4 cup coconut milk

Vanilla Instant Breakfast

1 scoop protein powder

1 slice fresh ginger

1/2 cup Greek Vanilla Yogurt or Vanilla Ice Cream

1 apple

Cauliflower stems

fish oils

flax oil

1 Ensure Plus or Boost Plus

1/4 cooked quinoa or white rice

Pulse twice for 15 seconds, then blend twice on highest setting for 50 seconds.

Sooo good for you!


2 broccoli stems



wheat grass


flax oil

fish oils

1 cup whole milk

1/4 cup coconut milk

Kombucha multi-greens drink

1 scoop protein powder

Pulse twice for 15 seconds, then blend twice on highest setting for 50 seconds.


1 tin sardines in mustard sauce

1 cup whole milk

baby carrots

frozen corn

frozen pineapple

Gouqizi (Chinese Wolfberry) (or may use 1/2 orange including pith and seeds)

1 teaspoon flax oil

liquid acidophilis

1 slice fresh ginger

1/4 cup coconut milk

1/4 cup protein powder

1/2 orange

Orange Gatorade

Pulse twice for 15 seconds, then blend twice on highest setting for 50 seconds.

frozen sweet cornMELLOW YELLOW WEEKEND

Frozen sweet corn

1/2 banana

frozen pineapple

1/4 cup Quinoa ( a high-protein grain that is cooked like rice)

Tin of sardines in Mustard Sauce

Whole milk, Ensure, or Boost Plus

Protein Powder

slice of Ginger

flax oil

Pulse twice for 15 seconds, then blend twice on highest setting for 50 seconds.

* Our protein powder of choice:

An excellent vegetable protein powder, and very digestible

The 1,000 Calorie Shake

This goes down easy

Between the time John was diagnosed (January 11, 2012) and the time he started radiation and chemotherapy on March 12th, we knew we had to get some extra weight on him…fast.  He weighed 158 pounds, and at 5’7″ this was mostly muscle from working out regularly at the gym.  We had to let go of some ideas about “healthy eating” (which for us was low fat) and increase his fat intake.  We succeeded in putting 10 pounds on him, which was much harder than it might seem. John naturally does not have a big appetite and never has eaten much food at one sitting, so condensing as many calories as possible into one glass was essential.

We also knew that after two weeks of radiation he would start to have trouble swallowing solid food.  It was agreed that he would need a feeding tube (or PEG tube).  We were also going to need a high calorie drink that would fit in the tube.  Fortunately, I was in touch with a woman whose husband had just finished his treatment, and she gave me her 1,000 Calorie Shake recipe.

The thousand calorie shake just starts at 1,000 calories….and it can be modified in many ways.  This is just a baseline to get you started!  You don’t need a special blender for this recipe, either.

The Basic Version can be either swallowed or put through the PEG tube.  Notice that I only use vanilla flavor.  This is because Cisplatin (chemotherapy) or radiation can make flavors like chocolate taste metallic or strange for awhile, but vanilla seems pretty harmless.

Sometimes even now, five months after the end of treatment, John’s throat gets sore from eating new foods, and I’ll make up a quick 1,000 Calorie Shake to keep him going.

Basic Version with Ice Cream:

Ingredient Calories Protein Fat grams
8 oz Whole Milk 150 8 8
Veggie Protein Powder* 129 22 1
Instant Breakfast, 1 packet Vanilla 130 5 0
1/2 cup Vanilla Ice Cream 150 3 7
Boost Plus or Ensure Plus 360 14 14
Malted Milk Powder, 3 Tblsp 90 2 2
Totals 1009 54 32

Here’s a denser version, with Greek Yogurt for probiotics and Coconut Milk:
You might want to check out this article on The Ten Benefits of Coconut Milk.

Ingredient Calories Protein Fat grams
8 oz Whole Milk 150 8 8
Veggie Protein Powder* 129 22 1
Instant Breakfast, 1 packet Vanilla 130 5 0
4 oz Vanilla Greek Yogurt 160 4 10
Boost Plus or Ensure Plus 360 14 14
1/4 cup Coconut Milk 138 1.37 14.3
Malted Milk Powder, 3 Tblsp 90 2 2
Totals 1157 56.37 49.3

Want to add more fat and protein?
Add 1 raw egg

Ingredient Calories Protein Fat grams
1 raw egg 78 6 5

Pulse the egg in at the end or it makes it too frothy.  DO NOT add the egg through the PEG tube.

*Let’s talk about protein powder:

An excellent source of plant proteins

Because these shakes are inevitably dependent on dairy products, I used a plant based proptein poweder instead of a whey (dairy) based or a soy based powder.  The Life Basics Vanilla Plant Protein Powder tastes good and gets its protein from a combination of Pea, Hemp, Rice with Chia Seed.

See my upcoming post on Five Element Feedings, where I show you how I got really creative using 5 colors of the rainbow in making daily drinks in the BlenTec blender for John.

Support from the Imerman Angels: “I Promise You, I Will Not Let You Go.”

Ten weeks after John’s last radiation treatment for HPV+ tonsil cancer it seemed as if his recovery had stalled for good. Still unable to eat even soft foods without pain, he was getting cranky when not utterly withdrawn and I was getting exhausted. Most of the time it seemed he wasn’t really “there,” and who could blame him? I’d be checked out of my body, too, if I was in that much pain for so long. But I was lonely. I missed him, and was beginning to wonder if he’d truly ever be himself again. His doctors all thought things were coming along just fine, but they’d never actually been through everything he had, had never been in unrelenting pain, week after week.

first rad 3 Worse yet, I’d gotten two phone calls that week from men in their 50’s, newly diagnosed with the same cancer, looking for advice. Overhearing one of these conversations, John said in frustration, “You don’t know what it’s like to go through this. None of the doctors can tell you what it’s really like. No one knows how this feels!” I had to agree with him. No matter how much empathy I was capable of, I truly didn’t know what it was like to, among other things, be bolted down into a hard, form-fitting mask six times a week for up to 50 minutes at a time. In my meditation that night I again asked for help for John.

As a cancer caregiver I’ve been repeatly reminded that all you have to do is ask. Not only does help arrive, but the right kind of help arrives, sometimes delivering a better and more precise solution than what you’d asked for. This was one of those times. The next day I got a call from a Cancer Center volunteer (I’d never gotten a call from them before), wanting to know how we were doing. I described John’s frustration with having no one to talk to who actually knew what he was experiencing. John entered treatment a strong, healthy guy who worked out 5 times a week, and instead of getting better once this was all over he was still weak and tired and in pain and discouraged.

The volunteer had me look up Imerman Angels on my laptop, explaining that they match cancer patients and caregivers with people who’ve survived the exact cancer you are dealing with. She strongly suggested that I could also get help from fellow caregivers who’d been down the same road, and so I filled out the online form on the spot. I also sent the link to John, doubting he would follow through and understanding I couldn’t push him to do so….but he did.

Imerman Angels logo

The Imerman Angels organization found us a match more quickly than I could have dreamed.

Two days later when John was at physical therapy the phone rang, and Hector introduced himself in a rich warm hispanic accent as an Imerman Angel who had been matched with John. He asked me a few questions about where John was in his treatment timeline and then told me that it had been a year since his own treatments for HPV+ throat cancer had ended. Like John, he’d come into his diagnosis strong, fit and healthy, and like John he’d had surgery, chemo, and the strongest and lengthiest radiation treatments they give for any cancer. Like John he’d had a feeding tube, and like John he’d been beaten up more than the average person by the chemo.

“I was training for the Iron Man when I was diagnosed,” he told me. “I lost 60 pounds of pure muscle. I couldn’t eat or talk for a month. I ended up on dialysis for awhile from the chemo. I want you to know this….I am working out at the gym again. I rode my bike around Lake Michigan this morning. I am training for a marathon again. I have my health back. I know exactly how John feels right now, that this will never end, that he will never have his life back. But I will tell you this, John will start feeling like himself again, and very soon.”

Hearing this from someone who had actually been through the same ordeal was the most reassuring thing imaginable. Hearing from somene who had been athletic before, and had come back from the weight loss and fatigue and treatment toxicity to resume an athletic lifestyle was the very thing John most needed to hear. It spoke directly to John’s greatest fear.

Hector went on to tell me that his wife “was the hero of my story,” and asked if I would like to talk with her some time. I had to go to work and scribbled down his Chicago phone number. I wasn’t sure if, in his current state of withdrawal and apathy, John would call him back.

“Will you do me a favor, Hector? If John doesn’t call you back, will you please call him again this weekend?”

And in the kindest, warmest gentlest voice imaginable, in that velvety rich accent, Hector said the words that marked the beginning of our next phase of healing:

I promise you. I will not let you go.

I hung up the phone, sat down, and bawled like a baby.

When I came home that night John had talked with Hector for over an hour and was buoyed by the conversation. The next day I called his wife Susie. We laughed at the conflicting feelings of loving someone with all your heart and working your hardest to save their life while simultaneously wanting to kill them. “When you’re done with treatment you think, ok, now I’ll start to get better,” Susie said. “But the first ten weeks after the end of Hector’s treatment were hell. They don’t tell you how long it is before you really start feeling better on a day to day basis!” Both Hector and Susie reassured us that not only was John still going through the hardest part of the entire journey, but that he was very close to the end of that terrible phase.

Susie described Hector during that ten weeks after treatment as “not being in his body.” Friends would visit and say that despite the drastic weight loss Hector looked great, and Susie would stare at them, wondering why they couldn’t see “that wasn’t Hector!” I explained to her how I felt that John couldn’t even really see me, or consider what was happening to me throughout all this, and she bluntly said, “You’re right. He can’t right now. But he will.” She continued, “I promise you, John will be back in his body again. You’ll know it when you look back and talk about this in the past tense. You’ll know it when you can talk about it with wonder and amazement as something you survived together.” This was exactly what I most needed to hear, and she was right. A couple of days later it was as if John started coming ‘back online’ again, at first briefly, and then for hours at a time.

the mask Two weeks later on July 14th, a date neither of us will ever forget, as we were sitting out on the deck, John started talking about everything that had happened…in the past tense. He turned and looked at me in wonderment, as if really seeing me for the first time. “How does someone get through something like this without someone like you by their side?” he asked. I looked at his clear, open face, into his concerned and caring eyes, and with tears running down my cheeks said, “Welcome back.”

And now? John’s recent follow-up PET scan was all clear (NED, baby!), he’s started back to work part-time, he’s rehabbing the nerve damage to his shoulder from the chemo and he’s slowly working out at the gym again. He’s mostly eating solid food now, though it’s not yet a pleasant experience. His wicked keen sense of humor is back in full force, and he is enjoying life very, very much. Best of all, just as Hector promised, he’s starting to feel better every single day. We know that this is just the beginning, and that it will be a full year before John is completely over some of the side effects, but we now both have hope that he will continue to recover.

From the Imerman Angels website:.

Imerman Angels was created on the belief that no one should have to fight cancer alone and without the necessary support. At 26 years old, Jonny Imerman was diagnosed with testicular cancer and began his fight against the disease. Throughout his experience, Jonny was lucky enough to have loving support from his family and friends but had never met anyone his age who was a cancer survivor. He wanted to talk to someone just like him, someone who truly understood, and was intimately familiar with his experience. In short, he was looking for someone who had already beaten the same type of cancer. This was the beginning of Jonny’s vision and in 2003, it became a reality when he founded Imerman Angels.

Please help me spread the word about this amazing organization. Whether you’re a confused caregiver, a patient wishing you could talk to someone on the other side of what you’re going through, or someone who has survived and wants to mentor someone who is currently struggling with your same diagnosis, the Imerman Angels are truly wonderful. For the original published article and the comments received, see The Monday Night Cancer Club diary by smileycreek,  http://www.dailykos.com/story/2012/08/06/1117020/-Monday-Night-Cancer-Club-I-promise-you-I-will-not-let-you-go.

It Starts with the Right Blender

The key to my learning how to put real, actual food through the PEG tube (because John quickly grew weary of the processed gunk) is having the right blender.  Any foods introduced through a PEG tube have to be the same thin consistency as Ensure, and a regular blender can’t accomplish this.  It takes a Three Horsepower blender that can reduce foods down to micron level without any leftover sludge or debris that could clog the tube.

Fortunately, we’d already been using a BlendTec blender for a couple of years, a three horsepower blender so powerful you could probably mow the lawn with it.  While they are pricey, ours is worth it for these reasons:

  • We use it every single day as a major appliance for making smoothies or soups
  • It is sturdy and durable
  • You can process the most nutritious parts of fruits and vegetables such as skins, stems, and seeds, without any leftover residue
  • It is remarkably easy to clean.  You simply rinse out the blender when finished….no parts to lose!

Just how efficient is one of these blenders?  You be the judge and check out this video, where an iphone is successfully blended to dust within seconds.

I’ve been told the Vitamix blender works the same, and it is a similar price.

Smoothie Formulas by Jeff Primack

What to Blend Up:

I first learned how to blend and combine nutrional foods basked on Jeff Primack’s book, Smoothie Formulas, which includes recipes with cancer-fighting phytochemicals.

The remarkable thing is how many parts of a fruit or vegetable are entirely pulverized in a three horsepower blender…things like apple seeds and pith, even avocado pits!

For more recipe ideas see my post, Five Element smoothies (or how to get all colors of the rainbow into your smoothies!)

UPDATE: 07/08/12

John is 11 weeks out from his last radiation treatment and hasn’t had the PEG tube for several weeks.  His throat is still too sore for most foods, though, and many of the foods I could formerly blend up and put through his tube without regards to taste or acidity are still too harsh on his throat.  I still use the blender every day while I figure out what new foods can be introduced.

Today was a hot summer day, so I made a watermelon smoothie, including a large wedge of watermelon (seeds and rind included), cucumber (seeds and rind included), vegetable protein powder, Greek yogurt, and coconut milk.  He found it light, refreshing, and tasty.

Welcome, fellow Caregivers!

More and more men are turning up with HPV+ throat cancer, and my husband was one of them, diagnosed on January 11th, 2012.  He was 54 years old, a non-smoker and moderate drinker who worked out at the gym 4-5 times a week, rode his bike, and was so healthy he didn’t even have a primary care doctor.

Needless to say, the diagnosis came as a tremendous shock.

I can’t tell you what it’s like to go through the treatments he endured or his recovery.  I don’t know what it’s like to have throat cancer.  What I do know is what it’s like to help someone through it.    This blog is based on my own experience and is intended to help my fellow caregivers help those we love with throat cancer.

While I am a Licensed Acupuncturist, I will not be giving any kind of medical advice.  What I will do is tell you what we experienced and how we coped.  I’ll tell you how we learned to cope with weight issues, the feeding tube, and radiation burns.   I share recipes, from the famous 1,000 Calorie Shake and recipes for getting a better level of nutrition through the PEG tube than just from guck in a can.  I’ll tell you about support we found and support we created and share various coping mechanisms we learned together through this difficult journey.

Everyone’s diagnosis, treatment, and recovery is unique, so I welcome your input as well.

And please check back as I add new information to the site!

Colleen DeLaney, L.Ac.

To PEG or not to PEG: Pros and Cons of using a Feeding Tube

As always, I am not giving medical advice here, just recounting why we chose to go with a PEG tube before John started radiation.

John was very fit and trim when he was diagnosed. He worked out with weights 3-4 times a week, took Pilates classes, and rode his bike regularly. At 5’7″ and 158 pounds he had very little body fat or weight to spare.

During the time between diagnosis and treatment we were able to add an additional 10 pounds to his frame, so he started treatment at 168 pounds.

Why John Chose the PEG Tube:

Going in, John was told he would lose 10-40% of his body weight from radiation. My biggest concern for him going in was weight loss. As I started reading blogs about dealing with side effects from radiation I first ran into the idea of a PEG tube. Punching a hole directly through your abdominal muscles and into your stomach sounded invasive and extreme, and I wasn’t sure John would go for it. As it turned out, he had no hesitation about it. John had just met a fellow who had gone through 6 weeks of radiation for HPV squamous cell tonsil cancer that was discovered in situ (that is, no spread to the lymph nodes) and he had chosen against the feeding tube. He ended up losing 40 pounds which actually brought him down to a normal weight. But John knew full well he didn’t have 30-40 pounds to spare!

John’s ENT and Radiation oncologist both recommended the PEG tube. John’s chemotherapy oncologist explained that the use of the tube is controversial to some. If a person becomes dependent on the tube and stops eating altogether they can have much more trouble regaining their swallowing ability after treatment. It was emphasized to John that even though he would have a feeding tube, he would have to regard it as an ancillary method of getting nutrition in him. He absolutely had to keep swallowing on a daily basis. John agreed to this. I had spoken with a local man who had undergone treatment for the same cancer 5 years earlier, and he had also used a PEG tube. He had gone for 5 weeks without swallowing at all, getting all his nourishment through the tube, and as a result five years later still had some difficulty with choking when eating. So John had a pretty clear idea that this was to be avoided.

John did continue to swallow every single day of his treatment and aftermath, even when it was excruciating to do so. He was told that water would be the most difficult liquid to swallow (thicker, more viscous liquids are easier), and so he made that his personal challenge and swallowed his morning pills with water every single day. As a result, he has had no difficulties with regaining his ability to swallow, as he never let it go.

It was recommended that John get the PEG tube “installed” at least three weeks before treatment started so that the wound would be completely healed up. He was warned that people who decided to “tough it out” without the tube would find it much, much more difficult to have one installed later.

Getting the PEG tube Installed:

John’s PEG tube was installed on 2.17.12. His first radiation treatment was scheduled for 3.12.12, so this gave him plenty of time to heal.

The procedure was done in the hospital under intravenous (not general) anesthesia. He was assured that this was going to be one of the simplest procedures with little downside or discomfort. Unfortunately, while this is true for most people, this proved not to be the case for him. I’m not describing this to scare anybody, but what happened to him has since happened to another acquaintance of ours who was subsequently diagnosed, and it is something that can be prevented.

John was sedated and taken into the procedure room. Briefly, a guide wire with a light on the end of it is run down the esophagus into the stomach. The surgeon then makes a small cut where he sees the light shining through the skin, and the plastic PEG tube is inserted through the hole. The tube is held in place inside the stomach by a small mushroom-shaped “cap” on the end. On the outside, the tube is held in place against the skin by a plastic hub.

When John awoke from the sedation he immediately had severe cramping. He was trying not to complain and to be a “good patient” but the cramps came in intense waves. He was given a shot of Dilaudid for the pain, but an hour later he was still having extreme waves of cramping. At this point somebody should have taken the bandage off his abdomen and checked the placement of the tube…but no one did. Instead, he was given another shot of Dilaudid. At this point John wanted nothing more than to get home and rest, and he assumed that the cramping would subside over time.

Unfortunately, while it did subside somewhat, the pain was still severe. When I came home from work that evening he was flattened in bed, unable to move an inch without intense pain. Sitting up in bed was impossible. He could slowly, with much painful effort, roll over on his side and I could then help him sit up. The waves of intense cramping were getting further apart but he was miserable.

Long story short, he spent an exceedingly miserable night in his reclining chair, hoping for respite. We knew we could go back to the emergency room, but we knew that would be an ordeal and that he would wait 6-8 hours in the waiting room.

I spent the evening searching the internet for an answer. I found two blogs where two men had the exact same experience. What they had in common? Both were lean, fit, muscled men with very little body fat. In one case the man went to the emergency room and the hub on the PEG tube was loosened by a GI doctor. In the second case, the man figured out how to loosen the hub himself, relieving his pain.

The following day we took the bandage off and studied the feeding tube. We tried fiddling with it a little bit to see if we could loosen it, but the mechanism for doing so wasn’t apparent. I called the on call number for the gastroenterologist who placed the tube, but instead of the call going to an answering service with a live operator, I got his office’s voicemail. Clearly I wasn’t going to get a call back before Monday (This turned out to be true, as the doctor’s office has neglected to switch their phone system over to the operator for the weekend).

What happens next shows the power of patience and persistence. I called the hospital and asked for the gastroenterologist on call. I was transferred to the emergency room, spoke with a nurse, and was transferred to the charge nurse, who couldn’t believe we could not contact John’s gastroenterologist. She even tried calling his office herself. She suggested we come to the emergency room. I explained that while John was very uncomfortable this was not a true emergency, that I didn’t want to make the 40 minute drive if I could help it, and that I didn’t want to sit in a waiting room for several hours with a cancer patient in the middle of a flu outbreak. She took my point and said she would contact the GI doctor on call.

15 minutes later the GI doctor on call called back. He had John’s records in front of him and saw the two Dilaudid shots that had been given. I explained John’s slim build and “wondered” if perhaps the tube was too tight. He agreed that John’s symptoms were likely muscle spasms from the tube being cinched down too tightly. He suggested we come to the emergency room. I explained again why I didn’t want to use the limited resources of the emergency room for a non-emergency. I explained that we were both medical people and understood the need for keeping the wound clean. I asked if he could simply talk us through the process of loosening up the tube ourselves. Thankfully, he decided to trust us, and explained how to go about releasing the pressure on the tube. It took us about 15 minutes of working with it, but once we loosed the hub on the tube and backed it out 2 cm, John’s relief was immediate and profound.

What am I suggesting here? I am not in any way, shape, or form suggesting that you fiddle around with your own PEG tube. I do suggest that, if you have it done:

1) Don’t have it placed on a Friday afternoon. If there’s a problem you don’t want to have to go to the emergency room.
2) Don’t leave the facility if you’re having pain or cramping, no matter how “difficult” a patient this makes you seem.
3) If you are slim or don’t have much body fat around your abdomen, report any cramping immediately. From what I can tell (and I realize this is only anecdotal), thin healthy men seem to have more trouble with their PEG tubes.

A couple of weeks ago I heard from a man about John’s age who weighed 130 pounds going into his treatment. There was no question he needed a PEG tube. He had the same experience as John, experiencing severe cramping and pain. He did end up in the emergency room until the gastroenterologist on call could come and loosen up the hub on his tube.

The feeding tube was a lifesaver.

One of the best resources I encountered was a blog called “You Start With a Tube.” The writer here was dealing with a long-term disease that rendered him unable to swallow, and he quickly grew weary of canned guck as well. Look for more information about him, about how to put all kinds of foods down a PEG tube, and how to deal with a clog if it happens.

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HPVANDME | A Non-Profit Organization

Support for those supporting people with HPV+ throat cancer

You start with a tube...

Support for those supporting people with HPV+ throat cancer

HPV Origin Throat Cancer

Diagnosed July 6, 2012 via Tonsil Biopsy

Caregiving for Throat Cancer

Support for those supporting people with HPV+ throat cancer