CRAIG~Your Tragedy can have a happy ending~Hope, resilience & determination will serve U well~Keep l

LorettaMarshall

(Note:  This letter is in reply to "CSacerdote" - http://csn.cancer.org/node/298089 - Problems following Surgery")

My Dear Craig,

           Let me start by saying I’m glad you’ve come here to visit.  I’ll take the privilege of saying, “we” when speaking of my husband William, because the day he was diagnosed, it was as though I was diagnosed with cancer as well.  That was way back in the year 2002.  After all, being married for 54 years to the same person really makes you “one” with that person.  So we both had to “start from scratch” to learn about this rare cancer.  So as soon as I asked the Gastroenterologist (whom we didn’t know either) how to spell ESOPHAGEAL, we started on a search to learn more about this cancer.  We felt like we were taking a “crash course.”  And actually for a time, we felt like we were in a “real crash” and life hung in the balance.  We had so much to learn and so little time to learn it in.  Believe me our medical vocabulary increased greatly when cancer entered the picture.  Oh sure we’ve all been familiar with hemorrhoids, tooth extractions, appendicitis, minor cuts and bruises, but ESOPHAGEAL CANCER…WHAT? WHOA—WAIT A MINUTE.  RUN THAT BY ME AGAIN—MY HUSBAND HAS WHAT?  HOW DO YOU SPELL IT?

          But now fast forward to last night, Tuesday, July 12, 2016, my husband has returned from a local Esophageal Cancer Support Group meeting at one of our local hospitals.  He shares his successful story of pre-op chemo and radiation prior to having the Ivor Lewis Minimally Invasive Esophagectomy aka “MIE” at the University of Pittsburgh Medical Center.  By now you know that Dr. James D. Luketich is the pioneer of the latest and least invasive surgery to remove a cancerous Esophagus.  And actually, it is no longer new since he first developed it back in the mid 1990’s.  My husband had his MIE surgery there May 17, 2003.  And all this is by way of introduction to anyone else who might be reading this letter, and have just learned that they too have this diagnosis.  The smartest thing one can do is research their cancer, don’t linger long in the “denial dump”, take control and own your cancer. 

             I often say, “To make a long story short” but actually that is mostly an impossibility for me because I want to share all that I’ve learned in the last 14 years in one letter.  I think that is why my letters don’t post properly sometimes, and I have to split them up into more than one section to get it all on the site.  Nevertheless, we said, “If we live through this, we want to share our story with others who are going to have this diagnosis and who will also be totally “blown away” as were we at the start.  As for my style of writing, it reminds me of a trip to Israel that I took back in the 70’s.  Instructions on how to best pack for the trip were—“If in doubt, leave it out!”  Nahh—not me I threw it “in”.  Believe me I learned that “Go Lightly” was more than the diuretic one takes the night before surgery.  I’m not planning any more overseas trips but I now also know a thing or two about packing.  And since my own Stage IV diagnosis of Peritoneal Carcinomatosis and Ovarian Cancer (terminal) back in 2012, my cancer vocabulary has increased even more.  And wouldn’t you know it, my body started out at the top, Stage IV—no need to mess around with a smaller number!

           So allow me to say this up front.  One of my favorite chapters in scripture is Psalm 139.  There I find David talking to the Lord.  Paraphrased the Psalmist is saying, “There’s no place anywhere in Your universe that I can hide from Your presence.  He goes on to say, “You saw me when I was being knit together in my mother’s womb, and in Your Book ALL THE DAYS OF MY LIFE WERE WRITTEN WHEN AS YET THERE WERE NONE OF THEM.  (So this is the reason I can still have peace even though I have terminal cancer, and my husband is in remission.)  As for my husband and me, we truly believe that God alone knows the number of our days, and that we will not die one day sooner, or live one day longer, than our allotted number of days on this earth!  If I didn’t believe that, I would most likely wake up each day preoccupied with thinking, “Is this day, going to be my last day?” 

           Now believe me Craig.  I’m going to be plain honest here.  I’ve spoken with your brother David through this forum since February of this year.  He has shared his heartaches with us in a more private setting, but I have his permission to share with the other members of our “cancer family” here things that have contributed to your deep depression.   You have had an awful traumatic experience, and it has been anything but positive.  (Moreover this should serve as a wake-up call to others who have cancer.  Often a patient will have to do their own research, walk behind the doctors and nurses, monitor the dispensing of medications, fill the role of a “physician’s assistant” and be your own advocate and mediator when things go awry!)

           You’ve had every right to question how many days you had left to live.  And once I learned of how badly you suffered, and am I allowed to say “mis-treated”—you’re a miracle to still be here talking to us today.  Frankly, based on my knowledge of what you’ve endured, you really are a miracle.  You are still alive.   I am both surprised and pleased to know you have made it this far.  I must say you are one tough guy Craig.  You truly are a “survivor” although you don’t feel like one right now.  Moreover, you probably have had days when you thought departing this life was the better option.  Without naming names, but you can if you wish, I can’t believe the way doctors who are supposedly highly-skilled Practitioners made errors that exposed you to such great trauma and needless suffering.  One would think they were anything but highly skilled.  Makes me wonder where the phrase “practice Medicine” came from.  I emphasize the word “practice” not as a noun, but as a verb in this case.  You would think they were “practicing” on you.  I think you would agree.  And we can’t even call it a “comedy of errors” because there was nothing funny about how you came to have a suffered with a collapsed lung and massive infection. 

           In thinking about how much to write here, I feel that it might be better coming from you rather than me though because really only you and your dear family know the complete story.  But Craig, you’ve been in a deep dark hole for quite some time now, and I’m praying that you can catch a glimpse of light at the end of this long dark tunnel.  (And no I don’t think it is a train light headed in your direction.)  Few of us understand the real purpose of our life on earth it seems, but we are all unique and loved by God.  He has carried you on His shoulders so far, I do believe.

           And usually it is only in hindsight that we can see where we’ve been.  Let’s don’t kid ourselves, most of us when we are diagnosed with cancer, will quickly question our life’s purpose and how we’ve spent it.  We think of all the things we haven’t done YET and still want to do.  We don’t have to change our priorities—suddenly they are “changed” for us when cancer comes to call.  Sure my husband and I both questioned whether we were going to live or die, when we were each diagnosed.  That’s only natural.  That’s when a lot of “stuff” once thought to be important, falls by the wayside.  We begin to think of our place in life, who needs us, and will we still be there for them.  Memories flood our soul and all of a sudden it seems our whole life is sorta’ like an accordion.  We feel a bit squeezed and our life begins to “fold” or “become compressed” into one short span ever so quickly.  With modern medicine, surely life doesn’t end at age 54 does it?  But in the end, little by little, we expand a little, we take another breath, and our time on earth is lengthened much to our surprise.  So my wish would be that I could help “lighten your emotional despair” by letting you know that your frustrations are justified.  However, I hope you can take the long look and dream of a better and healthier day.  You can make it.   

           Others here will share their experiences with you, and you will see that each person has had a different response to their surgical experience.  Some will have had pre-op chemo/radiation prior to having had an Esophagectomy.  And you can see how each one responds to their surgery, be it the Ivor Lewis (Transthoracic TTE- also known as open), the “Transhiatal (THE), or the (MIE) the minimally invasive Ivor Lewis Esophagectomy. 

           The “open” Esophagectomy patients are ones that have had the two very large incisions.  Paul61 is a case in point, but there have been many others here who really didn’t know that there was more than one type of surgery to remove a cancerous Esophagus.  Paul wasn’t aware of the MIE (totally laparoscopic) option, but he does now, and he encourages everyone to consult with an experienced Thoracic surgeon in a hospital highly skilled in treating Esophageal Cancer patients.

           Even now there are patients in my husband’s support group that are taking chemo treatments and have no idea of the name of the drugs, much less their complications or side effects.  Many don’t know the STAGE of their cancer, and they certainly don’t know there are choices of surgeries.  Now although the large incisions take longer to heal than the small Band-Aid incisions made with the totally laparoscopic procedure, the MIE,   there is one constant that all EC patients share post-operatively.  The “dumping syndrome—new dietary rules—new sleeping pattern—some degree of weight loss—repeated doctor’s checkups, etc. are all part of the “new normal.”  (I won’t go into those details in this letter.)  The purpose of my first letter to you personally is more of a “get-acquainted” letter and an invitation for you to share with any of us, either here on this public forum, or by private e-mail, or personal phone conversation, your valid concerns, fears, worries and questions.    

           I believe that we’re all in a state of shock when we go to see our doctor with difficulty swallowing, or heartburn, or unexplained weight loss and return home with a cancer diagnosis!  In my husband’s case it was just a pesky persistent hiccup that only happened when he took his first bite of any food.  He had no difficulty in swallowing.  So I think we all have one thing in common—the absolute shock of hearing the words “You have cancer!”  Soon after, depending on our own ability to “digest difficulties”, all kinds of emotions flood our soul.  Questions we don’t know the answers to start rolling in.  Living in Virginia Beach, we’re very familiar with “high tides and big waves”.  When big storms are forecast, we sometimes go down to the oceanfront, just to watch the big waves roll in.   Surely high waves and high tides can be used to describe the sudden storm called Esophageal Cancer.  What is Esophageal Cancer?  Surely there is some mistake.  Where do we go?  What do we do?  What doctors have experience with this cancer that we never heard about before?  All of a sudden memories of friends and family members who had died of cancer come to mind.  And if a name doesn’t come to mind, there will be some “well-meaning soul” who will inform you of someone they knew that “died” of cancer.  Great—just what you wanted to hear, right?  Another “non-thinking” soul will comfort you with these words, “Well we’re all going to die sometime.  We’re all terminal you know.”  All of a sudden, your name must be “Job” and these are your “comforters!” 

           Now Craig, I’m not a clairvoyant, but I know that you have both a brother and a sister who have watched you suffer and literally “been by your side” in every sense of the word.  Yet no one but you can really know how you’re feeling right now.  You’re the one who finds yourself wondering if you can keep your head above water in this sea of despair! 

           I will refrain from naming the doctor from Sloan Kettering since you have not.  But I do know his name.   From reviewing his credentials on Vitals.com, I see he comes with good credentials. So from that standpoint, I guess you had no difficulty in deciding that this thoracic surgeon was well qualified to perform your MIE surgery.  I would have thought so as well by reading personal reviews and viewing his credentials and “awards”.  He only had good reviews from the site.  One read: 

           “Dec 17th, 2010 - His New Video surgery was wonderful, less pain, quick recovery and his care was wonderful.  Now I know why the patient comes from all over the world.  (Mark as Helpful  | 2 people found this helpful)

 Another patient wrote: rk 

 

 

• Follows Up After Visit

  by John Morale on Apr 9th, 2010 - is the best. He saved my life.”

• From my point vantage point in retrospect, if it were me, I would be seriously considering a mal-practice suit against this particular surgeon.  But right now I’m sure that’s not your top priority.  “Stayin’ alive” is.  However, at the least, if it were me, I would certainly add one more “patient review” under his name. 

•  

  It would read something like this:

  “Failed to follow normal protocol for an MIE procedure in that I was never checked for anastomotic leak prior during my hospital stay.  No Barium swallow test was given prior to my discharge.  Surgeon said he only did that in approximately 50% of cases, and he didn’t think one was necessary in my case since chest fluids appeared to be “clear”. 

  Subsequently complications began 36 hours after discharge—rushed tolocal hospital ER due to a lung collapse where doctors inserted a chest tube to assist in withdrawing 3 liters of fluid.  Lung was inflated-pain meds & antibiotic were given to stabilize me.  Then I was transported back to Sloan Kettering 50 miles away.

  As a result of anastomotic leak, massive infection set in resulting also in acute pneumonia.  Upon readmission to Sloan Kettering, lung collapsed yet again.  A second chest tube was inserted to facilitate drainage. 

  The following morning a stent was placed to “seal the leak”.  Following that, a 3^rd chest tube was inserted to assist in trying to remove pockets of infectious fluid.  Repeated attempts were made to remove fluid over a 10-day period as surgery wasn’t possible with such massive infection.  Some treatments were administered without proper pain medication prior to procedures. Surgeon was dismissive and unapologetic, and didn’t think I was in any particular pain!

  Orders were placed for antibiotics but delayed.  Communication between attending physicians, nurses and the thoracic surgeon in charge were poorly coordinated (tantamount to the right hand not knowing what the left hand was doing.)  Conflicting information given to attending physicians.  In each case physicians had no authority to correct them without “orders from the main thoracic surgeon.”

  After placement of 3^rd chest tube, electrodes & vacuum tubes were reconnected but my nurse failed to plug the electronics into the wall that would have sounded an alarm in case something happened to me during the night.  Thankfully, a family member notified them of this oversight before further problems arose.

  In short, as a result of this surgeon’s negligence during the Minimally Invasive Esophagectomy by failing to administer the proper Barium Swallow test to detect anastomotic leaks, massive infection, lung collapse, and mismanagement resulted in a prolonged hospital stay.  I was in a critically-ill status.    Never, ever, would I recommend this surgeon to anyone.  While others have been totally satisfied with his treatments of them, I was totally dissatisfied.  Consequently it has caused me severe emotional distress and deep depression from which I hope I can recover and return to normalcy.  Hopefully, anyone reading this report will find it “HELPFUL” if you are contemplating engaging this surgeon for services.” 

  So Craig, I think you have been carried on the wings of angels to have recovered thus far from your grossly-inadequate and unprofessional treatments.  It is unbelievable that it could have occurred at a hospital with such a good reputation.  But allow me to post for you the following article from a Johns Hopkins study that was released May 3, 2016.  No doubt you have been too ill to read it or hear about it, but your story bears out the accuracy of their findings. 

  http://hub.jhu.edu/2016/05/03/medical-errors-third-leading-cause-of-death/

  “Johns Hopkins study suggests medical errors are third-leading cause of death in U.S.”

  “…The researchers caution that most medical errors aren't due to inherently bad doctors, and that reporting these errors shouldn't be addressed by punishment or legal action. Rather, they say, most errors represent systemic problems, including poorly coordinated care, fragmented insurance networks, the absence or underuse of safety nets, and other protocols, in addition to unwarranted variation in physician practice patterns that lack accountability.

 "Unwarranted variation is endemic in health care," Makary says. "Developing consensus protocols that streamline the delivery of medicine and reduce variability can improve quality and lower costs in health care. More research on preventing medical errors from occurring is needed to address the problem."…”

           WOW now that makes you feel good especially when you’re facing surgery or even a trip to the ER.  Now I’m not a doctor, but I can understand how all “unwarranted variations—these errors” resulted from your not being tested for an anastomotic leak.  In our EC world, “anastomosis” is the term used when the two organs are rejoined to make a new “gastric tube” once the diseased portion of the Esophagus is removed.  Bar none, this is the worst case of “ill treatment” that I’ve read about and I’ve read a hundred stories if I’ve read one since our introduction to Esophageal Cancer in 2002.    

          Craig, looks like you’re only lagging behind a normal recovery by 6 months or so.  This is the exact opposite of everything that is supposed to happen post-operatively to one who has had the totally laparoscopic “MIE” procedure.  My husband and I were downtown shopping in Pittsburgh on Day 8 from surgery.

           And one other thing, my husband once weighed in at 275, but lost 60# in the first 9 or 10 months following his surgery.  He now weighs in a range of 205 to 215 except lately he’s picking up more weight.  That happens when your appetite returns to normal as far as taste is concerned.  Even though you can’t imagine that happening right now, eventually it could just be the case.  We will make that our prayer for you, that all your bodily organs will get their “act back together”, and you can return to your “new normal.”  Believe me the surgery was a necessity, but you just happened to be “in the wrong place at the wrong time”, I would say. 

           So Craig, I hope this letter hasn’t served to depress you further, but rather it is intended to remind you that you are still alive by the grace of God, and you can fully recover.  Not that you can ever dismiss this disaster totally from your memory though.  In retrospect, if you had the “open” Ivor Lewis surgery, with these added complications and tragedy of errors, most likely I would not be writing to you today.  So let’s try to find something to be thankful for in this terribly traumatic treatment you’ve managed to endure.  And from someone purported to be a “skilled surgeon” yet!   Wouldn’t it be nice if at some future date after your recovery, you would be writing on this site and helping others through similar depressing times?  Surely they would say, “If Craig survived, surely I can.”

           The mere fact that you have come this far makes you a “survivor” although you may be asking a thousand “whys” at this point.  And if there were any “family feuds” in Heaven, William & I would be having “one hell of a fight” with Adam & Eve and you would probably “want a piece of Adam as well.”    You and my husband could “take on Adam” and I’m sure I could get the best of “EVE”! 

           But once we’re there all our sufferings will cease.  No more cancer—no more “recurrences”—no more do-overs!  Truly as the Psalmist said in Psalm 30:5 “…weeping may endure for a night, BUT joy comes in the morning!”  Craig, you have a strong will to live or you wouldn’t be writing to us today.  There can be a “morning" in this present world for you.  We’re all rooting for you.  KEEP HOPE ALIVE.  We’ll talk about food at another time, but for now I only wanted to say a “short HELLO!” from another sister and brother in your “cancer family.” 

 Love & prayers from William & Loretta

 (William – Diagnosed 2002 with Adenocarcinoma at the Gastroesophageal junction - “EC Stage III (T3N1M0) (Neo-adjuvant) Pre-op chemo of Carboplatin & 5-FU + 25 radiation treatments.  Ivor Lewis Minimally Invasive Esophagectomy (MIE) by Dr. James D. Luketich @ University of Pittsburgh Med. Ctr. (UPMC) on May 17, 2003.  William is still cancer free and now in 14^th year of remission with no evidence of disease (NED).

P.S.  Allow me to share a couple of poems with you.  The first one is by an unknown author?  It is titled:  DON’T QUIT.  The Second one is titled:  FOOTPRINTS IN THE SAND by Mary Stevenson.

____________________________________________________________________

  ___________DON’T QUIT  _________

 When things go wrong, as they sometimes will,

When the road you’re trudging seems all uphill,

 When the funds are low and the debts are high,

 And you want to smile, but you have to sigh,

 When care is pressing you down a bit,

 Rest, if you must—but don’t you quit.

 

 Life is erratic with its twists and turns,

 As every one of us sometimes learns,

 And many a failure turns about

 When he might have won had he stuck it out;

 Don’t give up, though the pace seems slow—

 You might succeed with another blow.

 

Often the goal is nearer than

 It seems to a faint and faltering man,

 Often the struggler has given up

When he learned too late, when the night slipped down,

 How close he was to the golden crown.

 

 Success is failure turned inside out—

 The silver tint of the clouds of doubt—

 And you never can tell how close you are,

 It may be near when it seems afar;

 So stick to the fight when you’re hardest hit—

 It’s when things seem worst that you mustn’t quit.

 __________________________________________________________________________

  ___________FOOTPRINTS IN THE SAND_________

 One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.

 This bothered me because I noticed
that during the low periods of my life,
when I was suffering from anguish, sorrow or defeat,
I could see only one set of footprints.

 So I said to the Lord, "You promised me Lord,
that if I followed You, You would walk with me always.
But I have noticed that during the most trying periods of my life
there have only been one set of footprints in the sand.
Why, when I needed You most, You have not been there for me?"

 The Lord replied, "The times when you have seen only one set of footprints, is when I carried you."

 ______________________(Author - Mary Stevenson)_______________

 

csacerdote

Thank you so much, Loretta.

Thank you so much, Loretta.

Wow - there's a lot here.  I'll try to address your points as best I can.

I'm not a religious man, but have begun to pray again just not knowing where else to turn.  I embrace nighttime because of sleep's escape, and dread the morning light knowing another day of fear/worry is coming.  But at both times I pray now that God will heal my body and mind and show me the way out of darkness.

Yes - my surgeon's credentials are quite impressive.  But he's also quite arrogant, something I observed the first time I met him.  To be fair, I was very satisfied overall with MSK's nursing staff.  But their doctors and fellows left something to be desired, at least in terms of attitude and bedside manner.  (I'm told this is pretty typical when it comes to academic hospitals.)

It appears my brother kept you fully up to date with my progress and post-surgical problems.  The strange part is that my pain was very well-managed prior to my initial release.  But following my relapse (lung collapse and related complications), I can remember nothing but pain.  Every test and procedure they performed entailed pain, especially injecting agents to help drain my chest fluids.  They insisted there was no pain indicated, although I assured them it was agonizing.  I had at least 3 of these procedures - 3 injections each - and it was like they couldn't even hear me.

I can fully believe the Johns Hopkins study.  In my case, it just seemed too many people were involved to keep matters well-controlled.  There are just too many things going on and too many variables to get wrong - surgical considerations, monitoring, dispensing of meds, communication between staff, etc, etc.  In my case, communication between the surgeon, fellows, nurses, and other staff seemed very poor - I got varying answers depending on who I asked.  Although a "case manager" was assigned, she really wasn't a medical expert nor did she seem to have any real authority over the medical team.

...to be continued...