Stomach Peg Original Soup ™ All that Middle Stuff

Stomach Peg Original Soup ™ All that Middle Stuff

Ok I skipped over all that stuff in the middle that isn’t much fun, because your doctor will spend a lot of time talking about all that “STUFF”. A friend of mine is about to start radiation for throat cancer and asked me a whole lot of questions about that middle stuff, so I figure I get cover my experiences.

SIDE-EFFECT TIME DELAY- The first three weeks of radiation are pretty easy in comparison with the next three months. By the time the fourth week comes up you are thinking “OK this isn’t so bad I can tolerate this.” The treatment and the side effects happen about five weeks apart. At the fourth week you start feeling tired and your throat starts to hurt. You may be on steroids which has it’s own set of side-effects – you will get very emotional. You will probably yap at the kids for not cleaning their rooms, and cry at sappy movies. I think my children really enjoyed seeing me cry at Christmas jewelry commercials. (my daughter just read this and agrees).

By the time you finish the radiation, you will start to think this isn’t very bad- don’t worry it gets worse(1). At the end of radiation, I was thinking about going back to work, my doctor and my wife looked at me like I was out of my mind – they were right I was out of my mind. It was either the steroids or the Oxycodone talking . . . I finished treatment mid-September and wasn’t back at work until mid-November. The truth? I wasn’t full functioning at work until January. Feeling better is just as slow a process as feeling tired.

PAIN- There I said it. Actually there wasn’t much pain. I am at Dana Farber and they were very conscience about managing pain. I thought I was taking a lot of pain med, but they assured me that I was very low or the scale of the amount of pain meds I was taking. My friend told me that the Oxycodone he was on got him a little high, it didn’t affect me that way at all. The liquid was great because I could just pour it down the Stomach peg. I would say I was in a constant state of discomfort, but not pain.

The three main areas of pain were general body ache, throat is on fire when you swallow, and burn when you brush your teeth. I used a Lidocaine mouth rinse before eating and brushing my teeth that really numbed up the whole mouth. I also recommend getting a little kids toothbrush with a smaller bristle head because the brush is softer and you are able to brush teeth when you are unable to open your mouth very much. Personally I used a Whinny the Pooh toothbrush

WEIGHT LOST – It’s going to happen. Your body will take a toll on losing weight. It’s amazing how much energy it takes to lose weight. I lost about 2.5 pounds every week for about 4 months. Yes that is about 40-50 pounds. ( 6 months after getting my Stomach Peg out, I still weigh 175 pounds. Which is why getting as much food as possible into your belly is important.

TIREDNESS – I didn’t want to get out of bed, but I did because I had to put food in my belly at 6:30AM. Then I moved to my comfy chair for my “cans and soups” This became standard operating procedure for the rest of the day, until my son came home from school, where he would try to get me to move around.

PURPOSE OF LIFE – The best and worst thing I did was coach 5th and 6th grade girl’s soccer. It gave me a great purpose to life; however, my coaching skills were well tested. I told you about the steroid issue of high and low emotions. These came out on the soccer sidelines. The big thing I learned is that my girls played soccer for the love of the game. Thank goodness because we weren’t an offense threat.

Love always
Jeff Scott Hoyland

(1) When you are functioning at 25% capacity you don’t notice sliding to 10%. But when you go from 10% to 20 % your think you are on top of the world when you aren’t.

My Friend TOny's wellness visit during the summer of Chemo

Stomach Peg Original Soup ™ Weaning off the Peg

Stomach Peg Original Soup ™ Weaning off the Peg

Weaning yourself off the Stomach Peg is an important part of the process. Your doctor will tell you something like “YOU NEED TO MAINTAIN YOUR BODY WEIGHT FOR THREE WEEKS WITHOUT USING THE STOMACH PEG, BEFORE WE WILL TAKE THE PEG OUT.”
This process starts about two months before. I wish I was one of the lucky people who could just eat ice cream to put on the weight, but alas I could not.; to much dairy gave me heart burn, and the sugar in the ice cream made me cough (several months after the peg was removed, ice cream still makes me cough).
I still couldn’t eat a big meal, but I could eat four medium meals. This is the only point in your life when your doctor will proscribe that you should eat more and put on weight. GO WITH IT!! At work, I liked watered down oatmeal for my ten o’clock meal. By this time my friends and co-workers were saying I looked great. But really your at about 50%, which is vastly better than running at 10%. They will live vicariously through you. Remember you don’t have to worry about “FAT FREE”.

My successful tricks-

Soy milk with whey powder-
Especially the vanilla favor was a favorite breakfast, lunch, and dinner. I used it to wash down even hard to eat stuff like breads and crackers.

Cucumber and Spinach Shakes –
A friend recommended this because the cucumber and spinach help fight “acid stomach”.

Big Bowl of Soup Shakes-
My wife would make me a bowl of regular soup. I would eat as much as I could (at the beginning it might have been as little as three spoonfuls). Then blend the rest and drink as a warm shake. This may seem odd, but the time you get to this point, everything is better as a shake. Split Pea Shake! Chowder Shake! Minestrone Shake!

Butter-
Oh butter tastes great on everything – noodles, oatmeal, eggs, toast (if you can), cream soup (Loved Chowders), noodles (yes buttered noodles need to be mentioned twice), etc.

Cheese –
For some reason milk and I disagreed but cheese and I got along fine. Especially, soft cheeses like brie. My friend knew I couldn’t have beer, so he got me beer flavored cheese like Porter Cheese, and Chimay Cheese.

Peanut Butter and Celery-
I was surprised that this worked. There is enough juice in the celery to melt the peanut butter that it was easy to swallow.

Receiving Chemo and fluids at Dana Farber

Stomach Peg Original Soup ™ SPOS THE CARE GIVER TOP 5 SUGGESTIONS

Stomach Peg Original Soup ™ SPOS THE CARE GIVER TOP 5 SUGGESTIONS

Do you want something to eat?
NO!
How about some soup?
NO!
You need to have something, how about something to drink?
NO!
I can make you a smoothie?
NO!
What can I make you?
NOTHING! I’m cold and Tired!
YOU CAN’T JUST HAVE CANS ALL DAY . . .
Sound familiar?

My son, Alec, put it best: living with a dad with cancer was like living with a pet bear. You feed it. You scratch its fur. Usually, it’s hunched over and hibernating, but you have to be careful because it will lash out and rip your head off. I nearly laughed my head off because of how on point this statement was.

As a Care Giver, I cry for you, because I know I was a bear. You watch your loved one in pain and there is not much you can do – especially if we are tired and grumpy.

On the food side, here are some suggestions:

1) JUST DO IT. We are tired, cold, and generally miserable that there is little that will comfort us by the words that you say. Our body is busy consuming itself making us lose 2-5 pounds a week. If you think we need food – just make the food and set it next to us. If you think we need drink – just make it and set it next to us. If you think we need a blanket – just bring over the blanket. Don’t ask us questions because it is easy to say NO! In fact it is easier to say no multiple times. I know you want to check in and see how we are doing, but once we start the downward spiral of saying “NO!” back off and just do it. Every time my wife, Randi, set down a bowl, or glass, or cup she was saying “I LOVE YOU”.

2) LET THEM EAT WHERE THEY ARE. When you are miserable the last thing you want to do is go to the kitchen table and eat next to nothing, proving you are ill with a cancer that you never asked for in the first place. I had a favorite easy chair in front of the TV which I would curl up on with my comfy blanket and watch my favorite shows – ELLEN and American Chopper (the first couple of seasons). Randi, my wife, finally let me have a stool which I used as a table. It held my water glass, my soy milk glass (easiest thing for me to drink) and a plate for food. A typical meal took me about 2 hours to eat. There was no way I was going to sit at a dining room table for two hours. The idea is to get nutrients in the body, and exercise the throat. If it takes two hours- it take two hours. Que Sera, Sera!! Trust me this is the hardest thing to do.

3) MAKE SMALL PORTIONS. There were times when my Nutritionist, Stephanie Myers, was happy if I had two spoonfuls. So put 4 portions in the bowl/plate. It looks like next to nothing. And then you will add double to that. WHOA! When the patient looks at the bowl they will turn away because they know they will never finish it. Instead, put out the small amount in a small bowl and then in about a half hour come back and replace the bowl with a new bowl of food. NO COMMENT NEEDED. There are certain foods perfect for this - especially scrambled eggs. Find the comfort food that will go down well.

4) DON’T BE TOO CREATIVE/ DON’T TELL US WHAT IS IN IT. My wife made smoothies all the time, because it was one of the few things I could consume orally. If is sounded to exotic and not comfort food – I would be the bear and not want to try it. So she would just make it and set it next to me and tell me the flavor – VANILLA. I’m sure she added turmeric, soy powder, or something else that was good for me. She read all these books about anti-cancer foods – trust me when you can get only two spoonfuls down the throat the last thing you want to hear about is anti-cancer foods. OH and I do add turmeric to my foods now – especially Chili

5) LITTLE WARMER THAN ROOM TEMPERATURE – Remember, we got the Stomach Peg because our throat is sore. SPOS can be drunk at room temp. SMOOTHIES are great at room temp. SOUPS should be a little warmer room temp. Eggs should be a little warmer room temp. Remember we are big babies – BIG FUSSY BABIES – BIG FUSSY CRY BABIES. We like our food at baby milk bottle temperature.

You never thought you would be an animal trainer, and can’t hurry cancer treatment. One of my favorite quotes, “THIS TOO WILL COME TO PASS.” God Bless you

Always,
Jeff Scott Hoyland

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My Caregivers, keeping me company at Dana Farber

Stomach Peg Original Soup(tm) SPOS I’m not a Chef

Stomach Peg Original Soup(tm) SPOS I’m not a Chef

S’ppose you are not a chef. Ok, so you are not a chef. You grew up with a microwave and your microwave loves you. You don’t have the time or energy to make your own soup. Trust me there are days when getting out of the chair and going to the kitchen is an Act of God that needs to be premeditated. You finally convince yourself that you can walk with a blanket wrapped around you all the way to a kitchen (during the next TV commercial). You can use pre-made soups. However, there are a couple of rules of thumb to keep in mind.

Avoid soups with meat in it. I’m not a vegetarian, and right now I’m thinking about a porterhouse steak, but that aside pureed meat don’t screen that well. They tend to block the screen so you spend a lot of time dumping out the screen, which when you are already tired and cranky is bad.

Pick soups with starch already in it. Minestrone was one of my favorites- a little pasta, lots of veggies, and more importantly most of my friends could make it and bring it over to the house. I thought of it as lasagna in a soup. Rice soups are OK just remember, you have to puree a long time. Potato and Leeks Soup was a nice change of pace, especially if tomatoes upset your stomach. I could not get enough split pea soup. I could eat a couple of spoonful orally and the rest went down the peg.

Add Soy Powder. Since we left out the protein in the soup you will still need to add your own protein. I was able to bring soymilk with whey powder through my whole radiation recovery which helped me get all the protein I needed.

Add Spice. I’m not talking hot sauce or black pepper, I’m talking the anti-cancer spices and powders. My liver was running some above normal indicators in my blood screening. My medical team agreed that Milk Thistle supplement was a good thing to add to my diet. I could swallow the pill or break it open and add it to me soup (depending on how I felt that day).

REMEMBER: Comfort of having soup is key. Although I tout trying to make sure there is as much nutrition as possible, there are many days when the smell of a comfort food is the best medicine. Just because the soup is pre-made does not mean that there isn’t any love in the soup.

Enjoy,

Jeff Scott Hoyland

Working before Radiation after major Chemo

Stomach Peg Original Soup™ SPOS STARCH ADD ONS

Stomach Peg Original Soup™ SPOS STARCH ADD ONS

PASTA:
When going through radiation you are going to lose weight. Dana Farber worked with me to minimize the amount of weight I lost per week. Since I wasn’t going to consume 12 cans of “Nutritional supplements from a can” per day, I needed to add starch into my diet. I found that over-cooked pasta worked best. The shape of the pasta didn’t matter because you were going to puree it up anyway. You really need to over cook the pasta, because when you use the immersion wand to puree it, it needs to have very few lumps. Whole wheat pasta needs to be cooked longer, I usually cooked the pasta on high for ten minutes and then simmered for a half hour TV program.(1) Pour the water out until you have about equal parts pasta and water, then puree. Yes it looks terrible. Its just a milky white broth. Trust me it even worse when you let it chill in the refrigerator! This is why I kept it separate from the Basic SPOS.

POTATO:
It works wonderfully. Basically, you are adding mash potatoes to the SPOS. The biggest problem is that your kids will eat it before you get a chance to use it

RICE
I never really found a way to over cook the rice and puree it into a mash that I could strain. I will admit that I am not an expert rice cooker, so in the hands of a master or at least an experienced rice chef it should work very well.

OTHER STARCH:
Basically if you can puree it you can use it. The purpose is to pick a starch that the patient finds appealing when it is not pureed. If I could have found a way to puree a rib-eye I would have!

RECIPE INSTRUCTIONS:
Just before you strain the SPOS into the microwave safe mixing bowl, pour/push the starch through the strainer. I typically used about a ½ cup of starch. Then pour the SPOS through the strainer. Before you microwave the bowl, stir the soup to gage the thickness of the soup.

Enjoy

Jeff Scott

(1) It is a known fact that I spent hours huddled in a comforter in the big easy chair watching Ellen and American Chopper. My cooking habits tended to run in half hour increments.

Middle of Radiation with Chemo-lite

Stomach Peg Original Soup(tm) SPOS

Stomach Peg Original Soup™ SPOS Updated June 13th, 2011

8/2016 Update:  I own a Vitamix now which is perfect for blending and pureeing.  I don't use the immersion wand anymore.  However, I will leave the directions as originally written, for those who do not have a blender strong enough

Preface:
When they told me that I had to have a stomach peg, and that I would have to pour 10 cans a day of brown nutrients down the tube, my wife, Randi, was horrified. Randi is an organic general vegetarian and nothing on the side of the Abbott Laboratories Ross Nutrition Jevity 1.5 Cal high-protein nutrition with fiber sounded anything like “ORGANIC” or “NATURAL”. I personally have a fondness for Food Network and Whole Foods produce, so I wasn’t excited either. Suppose you wanted organic? S’ppose you wanted Natural? S'pos? Hence, Randi made the first batch of SPOS. Now SPOS did not replace the Jevity, but it did give me the sense of real food I needed to recover. I am convinced that between the SPOS and the Jevity, I kept my body healthy and could endure the months of Radiation.

DEDICATION: this soup is dedicated to Sue Broderick, another Cancer survivor, who provided me with many homemade soups during my cancer Treatment.

STOMACH PEG ORIGINAL SOUP™ RECIPE (Basic Stock)(1)

7 leaves of Kale Chopped
7 finely chopped carrots
2 turnips finely chopped
1 Onion finely chopped
2 celery stalks finely chopped
1-2 teaspoons of turmeric
1 DASH of Bell’s Seasoning
1 teaspoon of salt (2)
4 tablespoons of Soy Powder
1/4 cup Extra Virgin Olive Oil
1 Mystery vegetable (finely chopped) (3)


Set a pot on the stove capable of holding over a gallon of liquid, fill the pot ¾ full and turn the stove onto HIGH. Chop and add all the vegetables. When the pot comes to a boil add the salt, Bell’s, and turmeric. Stir pot to mix spices and then turn the heat down to simmer for one to two hours (4). When the vegetables are all tender to the point of mushy, turn off heat, and use an Immersion Hand Blender to puree everything in the pot (5). The soup should be thick but not as thick as pea soup

Now that you have a big pot of Basic SPOS you can add starch, protein, and other items (see later post on my BLOG)
To use SPOS you will still need to run the stock through a strainer to remove the pieces too large pieces which won’t fit through the tube. As a rule of thumb, I used about two cups of SPOS at any meal. I would ladle 2 cup worth of SPOS into a microwave safe measuring bowl and then use a hand strainer into another measuring bowl. If the soup is thicker than your nutritional supplement, thin with water or boxed chicken/vegetable stock.
After straining SPOS, heat it in the microwave until finger touch warm (6). Give a quick stir to even the temperature out. You find that room temperature or warmer liquids settle in the stomach better.

Enjoy

Jeff Scott Hoyland

(1) In subsequent blogs I will post variations of the soup. My wife, Randi can attest that it is very heartbreaking caring for a loved one like me for two reasons – there is not much you can do, and I was grumpy as a bear. Taking the time to make home soup was as comforting to her as it was to me.
(2) Talk with your doctor/nutritionist about the amount of salt you should use. Its soup! It has to have some salt.
(3) What looks great in the produce aisle, remember you can only taste this soup when you burp. The goal is to pack as much nutrition into the soup, so pick one great looking vegetable
(4) The softer the vegetables are, the smaller they can be pureed and the more nutrition you can pour down the tube. Yea, the chef in me hated the fact that I over-cooked my vegetables.
(5) Don’t puree the soup while its boiling hot, but I found I could get better results while the soup was still warm
(6) It just like warming milk for a baby. Follow the same rules of thumb or nipple as the case might be.

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Please add your comments and suggestions to my blog.  Nice to see people from around the globe reading my blog.  Please follow you want the latest recipes.

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I have created a companion page on Facebook called: 100 Meals Pureed - Recipes for Head and Neck Cancer Survivors.  Sometimes it is easier to share a FB page than send a blog address.

Just before Cancer Treatment