Ivor Lewis

Mtngirl7533

My Husband who has been diagnosed with Adenocarcinoma at the GE Junction back in late October is scheduled for surgery March 5th. He was stage as T3, N1, M0. He completed aggressive chemo and radiation as well. Now comes the surgery. Our primary doc ordered tumeric and aloe vera juice for his j tube initially to help keep down inflammation and the aloe juice to protect his organs from the radiation. He seemed to do considerably well throughout the treatment. However, the last 4 weeks or so, since surgeon ordered the tumeric and aloe to be stopped pre surgery, he hasn't done as well. The pain has been back, in his esophagus as well as his head and chest. Swallowing seems to really bring the pain level up as well. I am thankful for the j tube to keep him nourished for sure! He can take in a small amount of food but not without pain. Anyways, surgery is scheduled a week from tomorrow and my husband is anxious to get on with it. I am praying his quality of life will be near what it was before? We realize he may have to eat smaller meals, ect. I have been married to him for 33 yrs. and know without a doubt that if he was unable to eat after healing, his spirit and zest for life would be gone. He enjoys eating as everyone does! Whether its my home cooking, eating out or family affairs/holidays. I know the surgeon will order a barium swallow before he leaves the hospital to make sure there are no leaks, ect. He will then go to liquid, then soft and then graduate to solids but does anyone have somewhat of a time frame? Thank you all for responding in the past! Know that I pray for all fighting any cancer!

LorettaMarshall

Girl U've got 2 go thru the operating room 2 get 2 the kitchen!

Hey there “Girl” who loves the mountains –

Me thinks you are worrying too much about “after” surgery.  Back up a bit and take the next step which will be a successful surgery. 

And let me say a word about your husband’s decision not to have a second opinion and go with a thoracic surgeon who has a great track record for minimally invasive esophagectomies.  The old saying is oh true here.  “You can lead a horse to water—but you can’t make him drink!”  And since we’ve spoken often it’s probably true for a “mule” as well.  They are known to be ornery and stubborn!  So he is choosing a more difficult recuperation period than is necessary—but he doesn’t know it yet.  So for that I’m sorry.  You’ve armed yourself with all the necessary information to understand what’s going on.  And yet it is the husband who has the final say in this instance.  Now I happen to think that OFTEN what I think is “wiser” than what my husband says, and so we agree to disagree while he usually lets me have my way.  Now ‘nuff said about that.

Since my grandson is here only for a couple of days from Michigan and you know how special they are —grandchildren—I’ll not give you my usual 20 references on a post-esophagectomy diet today.  But all you have to “worry” about now at this point is that the surgery will be successful even though it will be way more invasive than need be.

Your worries should come in this order—first that the surgery will be successful and that all the lymph nodes removed for pathology are cancer-free. 

Secondly, comes the Barium Swallow test.  Your husband won’t be eating anything if he has a leak, until it is cleared up, and leaks are dangerous!

Then will come the hospital stay for an interim period of time.  It may be longer for him since he is having the “most invasive” surgery.  Those big long incisions are going to have to heal, as opposed to band-aid size cuts.  My husband’s most annoying pain was from the “drainage tube” that rubbed against his rib cage.  But that was removed on Day 3.

And the spirometer that he is given should be used “religiously.”  Doctors had my husband up and around in 18 hours.  And he will take several walks a day—whether he feels like walking or not.  It is so important to be up and about to prevent pneumonia setting in.  My soul, that’s the last thing you need.

Now comes the diet when you get home.  Your husband should not be in a hurry to get rid of the feeding tube.  He will lose weight.  My husband was “too big” and lost 60# the first 9 months—then it leveled off.  Now his weight ranges from 203 to 208#.  And eating won’t be about “how soon” but “how often” he consumes what he does eat!  Don’t expect to eat steak and potatoes—that is for later.  Very soft foods in very small amounts will be tolerated best.  I find that patients underestimate the time it will take to get back to eating the same things they once enjoyed.  Now another old adage comes to mind, “Don’t bite off more than you can chew.”  In other words chew everything twice as long as you normally would.  Paul61 always has some good advice on how he ate and drank after his surgery.  It will be “many mini” meals during the day.   If your husband thinks he can “eat like a horse” straight out of the gate, he will have a rude awakening.  So I don’t think it will take him long to learn.  All EC patients have to learn to eat and sleep differently.  And eating more often during the day, due to the limited capacity of the new gastric tube, is the “new normal.”  Now I will say that before my husband’s diagnosis- EC Stage III, (T3N1M0) he always could eat two plates full of food.  He can only eat one now. 

I will say that your husband’s energy level will return quicker than his ability to eat like he did before he was diagnosed with surgery.  He will be able to eat ALL the things he once enjoyed—but in time.  It won’t be quickly though.  He will meet with a new buddy.  Most often patients will have to endure the “dumping syndrome” usually brought on by learning what to eat and when to eat in that order.  So for today, I would just get back to coping with the anxiety that upcoming surgery naturally brings.  If I were you, now that we’re old-timers, we can say at this point you are creating worries that need not be.  And I wouldn’t worry about what he can swallow NOW. 

As for what he has difficulty with now, most patients don’t return to normal ability to swallow until after surgery.  Some never regain as much capacity to eat as your husband has already had pre-surgery.  Just don’t worry about the turmeric. At the first my husband ate soft things like creamed potatoes, spaghetti, and yes even pizza before he ate meat.  But even then spicy foods can be a problem.  So for the time being, try to stay on the mountain top and get out of the valley.  You’ve got enough on YOUR PLATE.  As for my husband, I’m certain he wasn’t eating steaks for the first 3 months at the least.  But it’s been 16 years since I went through the first “diet” days post-surgery, but boy do I remember vividly the “dumping syndrome.”  We weren’t at home!  My advice there is—don’t go out to eat at restaurants at first, and always know where the bathrooms are!

Okay you know we have March 5^th marked on our calendar—that’s the next thing we’re concerned with for you and your husband. 

Love

Loretta

P.S.  You'll be so ecstatic when you first see your husband after surgery that the things you're worrying about now probably won't come to mind.  Everything works out in due time, provided there are no post-op problems and we pray all will go well!  

 

 

Deathorglory

Hello Mtngirl

Hello,

I am keeping you guys in my thoughts.  I hope everything goes as well as possible.  

Best wishes,

Ed

South Side Steve

Ivor Lewis

Hi Mtngirl.

I was diagnosed T2N1M0 Stage 2B in November 2011. After chemo and radiation, I had the Ivor Lewis surgery in March of 2012.  I know what your husband (and you) are going through. I'm happy to report that 6 years later, I'm doing great. They kept waring me that this was a life-changing surgery, but I'm doing everythng I did before surgery. The only major change is sleeping on an incline. I bought an adjustable bed and that was the best money I ever spent. Other than my previously favorite spicy foods, I can eat just about anything I want, just not very much of it.

As far as comparing the Ivor Lewis with the Minimally Invasive surgery, I feel that the expertise of the surgeon is more important than the type of surgery. I was in the hospital for 10 days and went home with a feeding tube (j-tube). I never did use the feeding tube because I was switched from liquids to soft foods within a week or two. I was fortunate in that I really didn't have any major problems after the surgery. The surgery was so easy I slept right through it. Most of my soreness came from a rib that was fractured during the surgery. My doctor didn't warn me about this, but I learned later that a fractured rib is common during the Ivor Lewis because they have to spread the ribs to make the new stomach/esophagus connection. I had my surgery in the middle of March and went back to my desk job the beginning of June.

If you want more info on my surgery, recovery, and post-surgery experiences, please feel free to message me and I will give you my contact information. It's easier for me to answer questions over the phone than to attempt to type comprehensive answers. My best advice to you is to do your best to keep a positive attitude. I believe attitude plays a major part in recovery.

Good luck to you and your husband in this journey.

Steve

LorettaMarshall

MtnGirl~By now hubby is N surgery~we R all praying 4 the 2 of U!

My oh my - the long awaited day has arrived.  All of us here that have been through this "ordeal" already have experienced the anxiety that you are going through.  By now he is asleep, but we hope all the surgeons and all their helpers have had a good night's sleep and all are awake!

Naturally, we want to hear about how things went when both you and your husband "are in recovery."  Those long hours in the family waiting room can be "hazardous" to YOUR health, so I hope some of your family members are there to "hold you up." I'm sure they are.  

And like I've said before, "Don't be surprised at all the wires and machines you see in his room.  They're all important to keep a close check on all his functions.  I still remember my husband saying, "I feel like I've been run over by a MACK truck."  And I must say he looked like it too.  But in 18 hrs. UPMC nurses had him up and walking and had moved him out into a semi-private room.  Nurses kept watch over him ever so closely. He didn't need anything for pain after Day 2.

By Day 3 he was out on the ward where all other his other fellow surgical EC patients were. 

By Day 4 he passed the Barium Swallow Test. NO LEAKS!  Hooray!

On Day 5, he was discharged.

On Day 8, I had him downtown Pittsburgh shopping.  Well, after all, caregivers do get some sort of remuneration for all that we've done for our mates, do we not?

And all praise to our Lord, William is still cancer free.  He had a semi-annual checkup just last week.  That's why we have to encourage everyone not to lose hope.  Although the stats are less than desirable, there are survivors.  But we have to go through the rain to see the rainbow!

Remember - "Life isn't about waiting for the storm to pass--it's about learning how to dance in the rain!"

Once more, praying for all things to go well.  Look for the rainbow! 

Love Loretta & William (aka Billy)

(& I'm sure everyone reading this wishes you well also)