What to expect

Dave Tronnier said:

Stay strong and know that time will heal your husband.

 

I had stage 3 esophageal cancer diagnosed on September 16 2015.  Your husband is going to need to get some bed wedges to elevate is torso to 30 % while sleeping so he doesn’t aspirate: he’ll also need another wedge that sits right below his butt on the bed that keeps him from slipping down flat. I used a sewing machine to build my pillow/wedge case so that the two wedges don’t separate at night while I’m tossing around in my sleep. Traveling will be hard as the bumps in the road hurt. I had 69 staples on front and had around the same on my back which were dissolving interior stitches. He is going to be very sore for a month + at least. Eating? Well that was hard. I had to undergo 34 dilations over 20 months of time. After surgery my anastimosis/stricture closed to 4 mm where I was unable to even drink water without choking. Spent 30 hours in a hyperbaric oxygen treatment after having 32 dilations and it took, the last two dilations have remained at 15 mm. and I have no further appointments. I now have my feeding tube removed and can eat most foods, Bread sucks and met gets difficult. Sometimes I eat a steak and just swallow what I can and spit the rest out at the table discreetly. I do a lot of regurgitating as I just can’t feel when I’m full and have to empty the last three bites nearly every time. It’s my new normal but it’s ok because it’s better than dead.

 

Bottom line, this is going to be hard, but if he fights hard all the way he will make it back to 90 % normal. Within 2 years. It’s hard but doable.  I went through 25 radiation sessions, 5 weeks of chemotherapy and a Ivor Lewis surgery at Mayo Clinic as well as 30 hours of hyperbaric treatment over the course of 5 weeks. Today I AM ALIVE and doing well. I’ve had to change some things about the way I eat, but otherwise I feel better today than I’ve felt in years. Your husband will be fine in time, lots of time, but he will survive as long as he keeps a positive attitude and your there to offer the support he is going to need. I’m sorry you and your husband are going through this; know that there is light at the end of the dark tunnel. No sugar coating here as this is based on my own experience. I truly wish your husband receives the best of care and keeps his head held high and has the fight needed to survive what is going to be difficult.

 

Trust that it will be ok in time. Stay strong and he will back on track again in time. Peace!

 

Dear Mtngrl ~

Reading this letter from Tronnier reminds me that it has been a while since we last heard from you.  The letter above is a testament to what can happen, but doesn’t always.  We sure are sorry to read about all the trouble he has had to go through.  He has it right in that no sugarcoating should be “applied” to patients who need to know about Esophageal Cancer, and what could happen, but hopefully won’t.

A case like he describes is one of the “OPEN” Ivor Lewis Esophagectomies.  It is true that often a person who has that “open Ivor Lewis” often says that they can’t sleep in a regular bed even in an elevated position because of the multiple sutures in their “front and back”.  We know a lady who still sleeps in a recliner and she attributes it to her “open” surgery.  But then there is Paul who invested in a bed that elevates, and that certainly was a smart move.  He can elevate it to a position most comfortable to him.  Having the “open” surgery often takes those patients the longest time to recover with the most probabilities of complications.  Paul had the Ivor Lewis and did have a time with infections, and then also endured post-op chemotherapy.  That’s a double whammy for sure.  But he is now as of today celebrating his 8^th anniversary since surgery of being cancer free. 

That’s why I’m so pleased to know that your husband will be having the totally laparoscopic procedure (MIE) that will involve only 5 small Band-Aid size cuts.  And that’s why we continue to implore all patients to have a second opinion.  While Mayo Clinic in Rochester, MN is ranked as #1 by USNews Health report in the specialty of Gastroenterology and GI surgeries, there are many good places that have Esophagectomies as their specialities.  Believe me this is not the normal EC patient’s story or else that hospital would not be ranked so highly.  Successful surgeries, and morbidity rates are considered in the way a hospital is ranked. 

It will all depend on your choice of a thoracic surgeon and his training as whether he only knows how to perform the “oldest” type of invasive Esophagectomy known as the “TransThoracic Esophagectomy (TTE).  At a major hospital, there is usually several thoracic surgeons and each one may be trained to perform a different type of Esophagectomy.  The ultimate choice is yours to make.  This “open surgery” is what Tronnier has described, and man has he had an awful experience!  Yet I’m happy that he is a survivor.  I’m also happy to know that this isn’t the usual recovery process.  Yet he is a survivor, and that’s far better than being staged as a “IV” and not even having the opportunity to have an Esophagectomy.

It is true that your husband will have to change his eating habits for a time, and his sleeping habits for all time.  I say, “eating” habits for a time, because my husband now eats all he wants to eat of any kind of food with absolutely no swallowing problems or regurgitating.  Yes, he eats more often during the day, rather than the usual 2-platesful of my home cooking as was his usual custom prior to the diagnosis of EC, Stage III (T3N1M0).

I’ve often said he is a poster boy for the Esophageal cancer patient.  Five days in the hospital and downtown shopping with me on Day 8.  His recovery was rapid, and energy level returned to normal within I would say 6 months at most.  We toured 3 states while recuperating in Pittsburgh during the first 3 months, and my husband did all the driving.  He’s always been a hard worker, and now his only deterrent is that he will be 81 in February and I will be 79.  Everyone our age knows how energy levels decrease whether or not you’ve been through a cancer experience that required a major operation, which your husband will certainly go through.  Then we hope that you’ll still be writing here, helping others when your young husband is 80 years of age!

We haven’t heard from you lately, but we understand that holding down a full-time job working and being at your hubby’s side helping him in every way possible, as he is undergoing his pre-op chemo and radiation, is a 48-hr. job in a 24-hour day.  But I’ve sent you so much info heretofore that you will have a good idea of what surgery can entail, plus the dietary demands afterward.  But it’s still one day at a time, and each patient’s story will be different.  As always our hope is that all is going well thusfar, and will continue to be so for your husband, as it did for mine way back when!  Fill us in when you can, but we understand how busy you are.  

Love & prayers as always,

Loretta (Celebrating my husband’s miracle of full recovery every day and we’re now into Year 15! With no complications and no recurrence.) His DX 11-2002/ neoadjuvant chemo/radiation then MIE @ UPMC by Dr. James D. Luketich May 17, 2003.)