"Jamrroh"~Diet suggestions 4 post-Esophagectomy patients-Wt. loss is normal after surgery 4 a X - Th

LorettaMarshall

“Dear John”

Was delighted to hear from you.  Congratulations for getting up the nerve to post anything EVER about yourself on the web.  You did well for the first time writing.  So I say, “Just chill out John--you are exhibiting all the normal characteristics of a patient that has recently had an Esophagectomy.  You are in the midst of a recovery phase and adjusting to a “new normal” in sleeping positions and diet are part of that process.  Things will continue to improve with time.”

So I felt you deserved your own “topic” line.  And if you wish to add more comments or ask more questions, it will be easier to find all your letters in one place.  So first I will copy your letter here and then I will respond with my usual “short” reply!

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You wrote:  “https://csn.cancer.org/node/310205 - Hi, I'm John  I could not swallow without pain. They found a 12 to 18 cm (mm?) tumor at the joint above the stomach. At the Cleveland Clinic they decided on radiation to shrink the tumor. 25 treatments along with 5 chemo sessions. Then 5 1/2 hour surgery to remove 80% esophagus and replace with stomach. 7 days in the hospital. 5 weeks on 100% feeding tube. Nothing by mouth. Then three weeks partial feeding tube and very small soft food meals. I'm a month after the feeding tube and it's tough trying to maintain weight.  I've lost about 20 lbs down to 158. It’s hard eating such small bites of food and trying to eat often during the day. I have a Ct scan coming up but have no fear. I am Catholic and looking forward to heaven when I'm done here. With God all things are possible and all He asks is faith in Him. It could have been a living hell going through this but with heaven ahead of me (and a loving wife) it was ok. Did I mention I had 13 tubes into my body when I woke up after surgery. A day at a time. Remember, the next hand you shake maybe the Masters. Thank you Jesus. ” _____________________________________________________   My remarks here:   Well normally “Dear John” letters are not well received.  In your case, I think it will not “hurt” to read my reply to you.  I was very encouraged to read your letter, and I’m glad you wrote.  I consider this a positive letter, since I am also “a child of the King”, by His mercy, undeserving though we are!  When you know the Lord personally, and acknowledge His presence on a daily basis, you realize “You’ll Never Walk Alone.”  As a terminal cancer patient myself, as well as the caregiver for my husband during his pre and post op treatments and recovery period, I can attest to the fact that being able to “see all the way to Heaven” enables me to cope with earthly troubles from a different perspective.  Being a caregiver, as well as a cancer patient, gives me a unique in-depth experience with cancer, “up close and personal.”  Admittedly, I never want to part with those I love down here, but I am certain of my eternal destiny, so in the “long run”—all is well!  But to be honest, walking daily, and not running ahead of the Lord is a moment-by-moment challenge.  It’s not easy coping with cancer and living “just in the moment” when you have researched the cancer.  It’s easy to “run ahead” and imagine a lot of “what-ifs” that can only engender added fear to our personal drama.  So for me, I want to know all I can about the cancers I’m dealing with, but at the same time sometimes it would seem that “ignorance would be bliss.”  But I’m a firm believer that as a patient it is my responsibility to know all I can about my particular diagnoses, so that I can feel I understand what options are available, and the potential outcomes.  So, in short, “I’m ready to go, but the Lord hasn’t sent me a text with a reservation date for my one-way flight YET!”  And although He is the Great Physician and can heal anyone anytime, He isn’t obligated to do so.  He’s already bought my ticket to Heaven, can I ask for more while a pilgrim here on Planet Earth, I think not!  Okay enough about the “past, present and future” tense of our existence thus far. First off, you didn’t give us a “starting date” as to when your swallowing difficulties started, but with 25 radiation treatments and 5 chemo sessions, you’ve been an Esophageal Cancer patient for quite some time.  However, my calculations tell me that you are now about 13 weeks out from your entry into the Cleveland Clinic for surgery.  I don’t know when you first learned about your cancer, but at this point, it seems you’re doing well.  So you must have had your surgery sometime in July of 2017 by my calculations.  And I can tell that while you’re dismayed by your weight loss, you’re elated with your survival.  One assumes that you did not have any residual cancer in any of the lymph nodes that were removed during surgery for pathology purposes, because that isn’t part of your conversation here.  So that’s a blessing for sure.  We know more than one person who has had to have both pre and post chemotherapy, and that’s a bummer when you’re trying to recoup from the actual surgery itself.  But it’s a necessity if even one node proves to be cancerous.  Now just a few words about your weight loss.  Will it give you any comfort to know that my husband weighed in at 275# at time of his Ivor Lewis Minimally Invasive Esophagectomy (aka MIE), at the University of Pittsburgh Medical Center, but lost 60# during the first 9 months?  He has maintained a weight range of 205 to 215# since then for his 6 ft. tall frame.    He needed to lose weight.  (I confess to being a good “country cook”—meaning “from scratch” food, and not from a package that is popped in the microwave.  Weight loss is altogether normal after an esophagectomy.  I haven’t read about, or talked to any EC survivors, who did not initially experience weight loss.  For some it began long before their surgery, and continued in a downward spiral after surgery.  Depending on the surgeon, some patients are given different post-op eating instructions.  As for my husband, he only had his J-tube in for 3 weeks after his MIE.  As soon as he “passed the barium swallow (leak test) on Day 4, he was released on Day 5.  He spent a good amount of time on the feeding tube initially but weaned himself off rather quickly.  “Osmalite” was the formula he was given during that time.  Dr. Luketich also suggested that he use BOOST.  My husband’s first meal consisted of 2 tablespoonsful of Cream of Wheat.  He was allowed to eat soft foods from the day of his discharge, but this was all his new “gastric tube” would hold! Now maintaining some level of “energy” is important during recuperation, so I find that using a powdered whey in different dishes can help.  There are 30 grams of protein in each scoop.  Boost has 15 grams of protein in each small bottle.  I like vanilla flavor.  My husband makes me a “fattening milk shake” that consists of a scoop of whey, a scoop of vanilla ice cream, a tablespoon or so of peanut butter, and stir in enough BOOST so that I can eat it with a spoon.  I know one EC survivor who gained a lot of weight after her surgery by eating lots of spoonsful of peanut butter.  It’s certainly high in protein and calories as well.  Oh and sometimes I get my husband to chop up a Reese peanut butter cup in it as well.  Now currently I am not on chemo, but will be entering another regimen sometime in the near future.  And so, this will have to be one of my daily “shakes” to maintain some level of nutrition during my treatments.  Incidentally 2 tablespoonsful of Peanut Butter = 190 calories and 7 grams of protein.  Now you see just talking about this projects me into the future, a place that if I dwell on it, will rob me of my joy for today.  All of our futures are very uncertain even when we’re in the best of health as “earth dwellers.”  Oh and one last thing, talk about wires, when I first entered the room where my husband was recuperating after the surgery, I was amazed at all the tubes and wires attached.  I said I don’t know what they are all for but I thank God that someone invented every one of these to help sustain life.  My husband surely looked the worse for wear, but he had a morphine pump that he could press when the pain became too unbearable.  Although he tolerates a lot of pain without complaining, he said that day he felt like he had been run over by a MACK TRUCK!  But he made a quick recovery.  He would soon be up and walking regardless of how he felt.  Getting the patient up as soon after surgery as possible is part of the quicker recovery process.  On Day 5, he was discharged, and was downtown shopping with me on Day 8.  I have to always say that to encourage EC patients who have not yet gone through the surgery.  While he is a role model for the MIE, all will not fare that well, but some will and for that reason, all EC patients need to know that there are survivors.  But believe me, when we first heard the words “Esophageal Cancer” death was one of the first thoughts that came to mind.  And even though unfortunately, that is the case for many, there are also survivors so I don’t want to see anyone not do all they know to do to recover.  So my advice would be to always have a 2nd opinion, and find an experienced Thoracic Surgeon thoroughly trained to perform the totally laparoscopic procedure known as the Ivor Lewis Minimally Invasive Esophagectomy. We found that surgeon to be Dr. James D. Luketich at the University of Pittsburgh Medical Center (UPMC).  He pioneered the minimally invasive procedure in the mid 1990’s, and it is the choice procedure now for those patients who have need of an esophagectomy.  Rarely do they have to revert to the old more intrusive and invasive procedure known as the Transthoracic Esophagectomy (TTE).  There is a world of difference in the way patients recover from the old OPEN surgery, and the totally laparoscopic procedure.  No doubt you were sent home with a good diet routine, I will include the one that Dr. Luketich gave to us when my husband was discharged.  Today my husband eats any and everything he wishes to.  Believe it or not, you will get to “steak and potatoes” even though you can’t “enjoy” them right now.  So keep up the good attitude, loving your wife, and the Lord are an unbeatable combination.  And yes, one day we will meet the Master.  I’m often reminded of that when we drive down the road and see a big billboard that reads:  “THERE WILL BE A TEST” simply signed GOD!  It serves to remind me that our Creator has given each of us unique abilities and talents that no other possesses.  And when we all use them to the world is a better place.  Love & prayers for your continued recovery.  Say hello to your caregiver and helpmate who is playing a vital role in your relationship and recovery process.    It’s normal to become a bit anxious when CT or PET/CT scans are due.  And may your upcoming CT scan show no signs of cancer.  That’s certainly something to shout about and thank the Lord for! Loretta Marshall (Wife of William- Adenocarcinoma @ the Gastroesophageal junction (EC – Stage III – T3N1M0) DX November 2012.   MIE on May 17, 2003 by Dr. James D. Luketich @ UPMC.  My husband is still cancer free. P.S.  One of my “need-to-do” things is to compile a list of foods and diet suggestions for post-esophagectomy patients.  But for the time being I will limit the list of references.  Patience is required to “muddle your way through until you can get back to eating the foods you once enjoyed.  That day will come. And incidentally, since you didn’t know whether the measurements of the tumor were in centimeters or millimeters, check back on your records and you will then know which measurements are correct.  So I looked up both sets of measurements on a conversion chart.  They are as follows:  12 centimeters = 4.724409 in.  /18 centimeters = 7.086614 inches. 12 millimeters is equal to 0.4724409 in.  / 18 millimeters = 0.7086614 inches.  _________________________________________________________  1.      https://www.cancer.gov/publications/patient-education/eating-hints#milk 1a.  https://www.cancer.gov/publications/patient-education/eatinghints.pdf “…This booklet covers: What you should know about cancer treatment, eating well, and eating problems How feelings can affect appetite Hints to manage eating problems How to eat well after cancer treatment ends Foods and drinks to help with certain eating problems Ways to learn more Talk with your doctor, nurse, or dietitian about any eating problems that might affect you during cancer treatment. He or she may suggest that you read certain sections or follow some of the tips…” _________________________________________________________ 2.      http://www.upmc.com/patients-visitors/education/nutrition/Pages/default.aspx “Patient Education Materials: Nutrition and Diet…” __________________________________________________________  3.      http://www.upmc.com/patients-visitors/education/nutrition/pages/dumping-syndrome-diet.aspx _________________________________________________ Here are other suggestions I have made note of from my EC friends here.  They will probably have other things to add as well, but these should give you plenty of "food to help stave off starvation!"  Paul61 gave these suggestions.  He said it is good to augment calorie intake with supplements that are high in calories such as products like BeneCalorie or Carnation Instant Breakfast. You can also find BeneCalorie at Walmart Carnation Instant Breakfast- “Donna70 suggests you keep it in the refrigerator and drink a few sips every half hour or so during the day between meals.  (Just don't gulp it down.  Could cause diarrhea)  She is also the one who gained her weight back by eating large spoonsful of Peanut Butter during the day. 4.  http://www.nestle-nutrition.com/Products/Product.aspx?ProductId=f5f4d29a-d26e-4152-85a4-31ba79059fd0 _______________________________________________________  5.      http://www.upmc.com/patients-visitors/education/nutrition/pages/esophagectomy.aspx “Diet After an Esophagectomy An esophagectomy (ee-soff-uh-JEK-tuh-mee) is surgery to remove the esophagus. After this type of surgery, it is common to have some problems eating for a few months. What can I expect after surgery? For the first few months after surgery, you may have problems such as: §  Weight loss §  Dumping syndrome (nausea, diarrhea, abdominal cramping, light-headedness) §  Excess gas §  Trouble swallowing Your diet plan after surgery is designed to lessen your discomfort and allow you to enjoy eating…” ________________________________________________________ 6.      https://www.oncolink.org/support/nutrition-and-cancer/during-and-after-treatment/post-esophagectomy-diet “Post-Esophagectomy Diet Karen Wagner, MS, RD, LDN and Katrina Claghorn, MS, RD, LDN Abramson Cancer Center of the University of Pennsylvania Last Modified: June 16, 2017 Esophagectomy is a surgery to remove all or part of the esophagus, which is the tube food moves through on its way from the mouth to the stomach. When the esophagus is removed, the stomach is pulled up into the chest and reattached to keep the food passageway intact. This stretching of the stomach takes away the ability to eat large meals, as there is no longer a large "holding area" for food to be digested. Nutrition is an important part of healing and preventing weight loss after surgery. Patients can experience nausea, vomiting, acid reflux, and dumping syndrome. This article will review some ways to decrease these symptoms. Check with your healthcare team for specific recommendations for your case. After the surgery, the remaining esophagus may not be able to move foods as easily from your mouth to your stomach. Certain foods can block the esophagus or be difficult to swallow. Some people complain of food "sticking", or have midsternal (behind the breast bone) pain. This may be prevented or resolved by sipping fluids when eating solid foods, chewing foods well, eating soft or chopped foods and avoiding tough, gummy, or stringy foods. You may also get gastroesophageal reflux symptoms, such as heartburn and reflux of stomach contents, causing intolerance to certain foods, especially acidic, fatty, and very hot or very cold foods. Gas and bloating sometimes occur after surgery. Therefore, you may wish to avoid foods that are known to cause gas. Each person is different and will tolerate different foods. Only you can decide which foods 'agree' with you and which don't. Below are ideas that may help you to manage your symptoms. The most important guide is how you feel after eating a food. Diet Basics After Esophageal Surgery…” _____________End of references for the time being_________________

Deathorglory

Hello John

Hello John,

Yeah, the post surgery period isn't any fun.  It holds 1001 different treats for different people.  Everyone winds up having to figure out their own, personal "new normal".  My surgery was supposed to be laproscopic, but there was some pre-existing scar tissue that turned it into an open surgery.  It was nine and a half hours total, and I woke up with seventeen holes in me that weren't there before.  I went from 165 pounds down to 115.  

I can tell you that it really does get better, just not as quickly as you want/hope.  It took me eight full years to regain all of the weight.  But I now weigh more than I did pre-cancer.  I eat/drink whatever I want in near whatever quantity I want.  You'll eventually improve to an acceptable point.  

Hope you get good results on your CT scan.

Ed