Ivor Lewis

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!  

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