Reminiscing with MARDIGRAS~a special hello & a follow-up on William's now N2 15-yr survival w/NED+in

LorettaMarshall
LorettaMarshall Member Posts: 662 Member
edited July 2017 in Esophageal Cancer #1

Dear Marcia ~

Just felt I had to say hello after I read your encouraging letter to “Chicko”.  (https://csn.cancer.org/comment/1587095#comment-1587095) Your name brings back so many memories of our times together on this discussion link years ago.  First let me congratulate you and Rob on making it past the “magic 5-year” mark.  For all “EC” patients, it seems to be a “MAGIC MARKER!”  Who knew that any of us would make it this far?  I just have to say hello because we had some great conversations in the past.  I’m so happy to see both you and Rob are still “survivors!”

And I’m so glad you got that SECOND opinion.   You know I recently saw an article from Mayo Clinic about the importance of getting a SECOND opinion.  (Referenced below) Seems more often than not the first opinions are often wrong, or have to be “tweaked” to better serve the patient’s needs.  We continue to sing the praises of Dr. Luketich from UPMC.  When I was diagnosed with Peritoneal Carcinomatosis here at home in November of 2012, I called Dr. Luketich at UPMC.  He had me to send him my reports.  He personally looked at them, and then took them over to Dr. David Bartlett, who did a PET scan and exploratory surgery.  My Second opinion revealed additional cancer in both ovaries. 

Dr. Bartlett’s advice was to come home, do chemo and then he would re-evaluate my condition.  So that’s what I did.  So the remarks I made in the link below were written during that time period.  Thankfully, the tumors were reduced enough that I could have Cytoreductive Surgery in which all “non-essential” organs were removed.  Since I had my uterus removed at age 36, and an appendectomy at age 12, I was already minus 2 “non-essential organs.” 

Fast forward to today, July 1, 2017.  Today is my birthday of yet another kind.  On July 1, 2013, I had major surgery at Passavant hospital, there in a suburb of Pittsburg.  It is one of many in the University of Pittsburgh Medical Center’s complex.   And I must say for the first few days, I questioned my survival.  This “Cytoreductive Surgery” included removal of both ovaries as well as my fallopian tubes, spleen, gallbladder, omentum, and sections of my intestines.  I mused as to how I would fare without those organs since God put them in there. 

But I’m happy to report that despite the pre-op chemo the first part of 2012—the Cytoreductive Surgery, (CRS), on July 1, 2013 was a real success.  I would have never lived this long without it, although it was never intended to be curative, rather it served as a “pre-emptive strike as to other places the cancer loves to attach itself to!  My hospital stay was longer than usual (42 days) because of a massive infection which resulted in the incision reopening 2/3rds of the way down.  This was an incision from between my breast to the pubic bone.  Now this didn’t pose a problem because I always wear a woolen bathing suit that came down to the knees.  Presently it has a hole in the knee that I haven’t had time to repair!  Surprised…..….NOT …….Just kidding!Laughing

We stayed for 3 months at Family House Shadyside in Pittsburgh because I wanted to recuperate where I was certain folks knew what they were doing.  We returned home in October just in time to attend my 99-yr. old mom’s funeral in November.  William (aka Billy) was my caregiver all that time.  The nurses taught him how to change the dressing every day and disconnect the wound vac and reconnect it.  I must have carried that vac for at least 2 months 24/7.  The home-health nurses visited the home 3X a week, plus I had multiple follow-up visits with Dr. Bartlett.  And then the wound didn’t completely close till March of 2014! 

Now the very first week that I had my surgery “Billy” developed a case of shingles Frown and was unable to visit me for a week.  I sure missed him being by my side for at least 12 hours a day.  But to this day he has a residual pain that starts underneath his right breast area and circles midway around the back.  He doesn’t take any pain meds for it though.  He just tolerates it.

So in a nutshell my stay at UPMC was a lifesaver.  Since then I’ve had targeted radiation treatment on 3 cancerous nodes on the Caudate lobe of my Liver.  The machine is called a “Cyberknife” and it eradicated those tumors in 2014.  It seems I have about 10 months of returning to some form of normalcy before the cancer attacks from another angle.  So I had another 6 treatment session of chemo in 2015—then another 6-series regimen of Carboplatin/Paclitaxel (Taxol) in 2016—and even now tumor markers are rising again.  After a while the body just quits responding to the same platinum-sensitive treatments, and I think I’m about there.  I’m praying about what decision to make when another thing happens that calls for some kind of treatment.  Presently I am enjoying a good quality of life, though I’m extremely fatigued because each session of chemo leaves me a bit weaker than before.  I do have some residual neuropathy from my very first chemo series.  But for now I’m praying for a “long hot summer” in which nothing crops up that can’t wait till winter.  But that’s a wish that may not come true.  There are quite a few “winters” in a cancer patient’s life as you know Marcia.  Furthermore, I’ve always said, “I’m not going to kill myself with chemo to the point that I’m struggling just to stay alive with no quality of life.”  And clinical trials for OC presently are just that--trials!

But I’m a firm believer in Psalm 139.  Paraphrased David the Psalmist says, “Lord no matter where I go, YOU are already there.  You even 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.”  And yet, there will be a time in my life, that the Lord will say, “Enough is Enough” and He will call me home.  I’m a firm believer that quality of life is the criteria by which Billy and I will measure all our treatments.  So I’m depending on the Lord to let us know what to do when the “next thing” happens.  It certainly is a walk of faith and should I also say a "trial by fire?"

You know my original diagnosis was “Stage IV” because of multiple tumors in the Peritoneal fluid in my abdominal cavity.  We didn’t bother ascertaining which came first, the Ovarian or the Peritoneal cancers.  At that point, it didn’t matter since treatments are the same for my particular diagnosis.  I was blessed to have been able to have the surgery, or else I would not be writing here today.  And so I’m still here, but God has blessed me with “long-distance” vision and I know for certain that I will meet Him on the other side.  Now I can’t see what “tomorrow” holds, but I know WHO holds the future for me and William. 

Never did I dream that when we went through William (Billy’s) Esophageal Cancer, Stage III (T3N1M0) surgery at UPMC on May 17, 2003, that I would be back there in the operating room myself July 1, 2013 with a terminal diagnosis.  Isn’t it a good thing we don’t know all that is coming our way while we traverse at times, this vale of tears but at the same time with intermittent joy?   But we continue to trust the Lord, for all the days that follow.  So yesterday, July 1st was my 4th anniversary since my surgery. 

And I want to thank you and all “our gang who supported us through some rough places from September on in 2012.  So many of you wrote letters on our behalf about our abrupt “unanticipated removal” shall I say, and so many of you wrote us and even called us in Pittsburgh when I was there for my Second opinion.   We had a real “close-knit” and caring group of patients and family members who truly cared for each other.  I’m glad there is a FACEBOOK group, and if you’re still there, you can share this letter with them.  If not, I will ask Paul to share it with all our many friends there.  We simply have never posted anything on FB, although we have read some of the things that family and friends put there.  But we’ve never forgotten the times when we shared each other’s sorrows on this link and gave them comfort as best we knew how.  We were truly “family”.  And Paul has been faithful to still be here on a regular basis.  And when I became a cancer patient, I signed on with my own story, and my own cancer, and I feel we’re pretty much still in the game here.   

William (Billy) and I celebrated his entering into the 15th year of survival on May 17th of this year, 2017.    His surgery was an unbelievable success, and when I read of others who are not faring as well—take Dustin and Amie for example, I want to offer them hope and at the same time am a little reticent to say how well we did, because it doesn’t match their circumstances. Yet offering hope coupled with good research information is what we’re about. 

You and I, as wives and caregivers, can both put ourselves in Amie’s shoes, as well as Billy and Rob, your husband, can put themselves in Dustin’s shoes.  We have all experienced a lot of the uncertainty that Amie and Dustin now feel.  As I’ve said before, the first thing we wanted to know was is this a “death sentence”?  Where can we go, and who can we talk to learn more about this cancer we had never heard of before?  And we made up our minds that “if we lived through this” we would try to help others along the way.  That has been the sole purpose for our being here.  We often signed our letters as..."Just one beggar telling another beggar where to find a piece of bread!"   

When we all started down this rocky road, we never knew where the curves were and where there were boulders!  And yet we plod on, not giving into despair, although desperation and exhaustion often tag along—sometimes whispering—sometimes shouting, “May as well throw in the towel.  You’ll never make it!   But we are not quitters so on we go as long as God gives us strength. 

 

In previous correspondence early on before my surgery in 2013,  https://csn.cancer.org/node/258528 you were asking about me and my husband.  Thanks for all your continued prayers for William and me.  It makes me happy to know that we were able to be a help and an inspiration to you to press on and get that Second opinion.  You know we were, and still are, heartbroken to have had so much of our research removed frankly because it was interspersed (my opinion) with references to God that were offensive to some.  There I’ve said it, and I may be thrown off after this, but I’m tired of some being able to flout their disbelief in the same God that I serve and yet remain on the site.  If it weren’t for the strength of my God, I would have been a basket case long ago.  And I should be able to share our own story of how we have coped.  That is supposed to be the reason for a discussion forum.  We condemn no one for their beliefs but we all should be free to be who we are!  We appreciate all the overwhelming support we received from so many of you.  I do wish all our 10 years of helpful research were still here.  Fortunately, for me, I still have all our research on file, and all the correspondence we had with ever so many.  It amounted to over 3,000 postings.  "Enuf said bout that!"  But that hasn’t kept us from sharing our knowledge and endeavor to help others along the way. 

So enough about me, let me bring you up to date about William (Billy).  He hasn’t been able to go back to Pittsburgh for his yearly checkup because I have so many doctor’s appointments here at home.  But we both go to the same oncologist, Dr. Paul Conkling.  Bill gets a checkup every 6 months, and he recently got another “good-to-go” checkup.

All during Billy’s bout with EC, we took pictures and videos along the way.  Billy is part of a support group here in town that meets every second Tuesday of the month.  One month we took all our pictures and videos and shared them with the group.  I narrated it from a “caregiver’s” point of view.  This was helpful for everyone.  Some were there to have surgery, some were undergoing chemo—some were there and had not done enough research to even know their stage?????  Sealed Some were having chemo and didn’t know what kind of chemo they were having!  And to our sorrow, some just wanted to bury their head in the sand and didn’t want to know anything!  I guess that fits the saying, “You can lead a horse to water—but you can’t make him drink!”   

Until just a few weeks ago, other than Billy’s bout with Shingles while I was at UPMC, things had been uneventful.  By the way, all 4 grandchildren are now grown and “out on their own”.  But we feel especially sorrowful for young parents with children like in the family of Amie & Dustin.  There is that frightening thought, which we all have as well, “What if the parent that’s been diagnosed with EC” doesn’t have a successful surgery?  What if they don’t make it?  How will the family fare with one of their loved ones gone?  Just how much do you tell the young children about the cancer that their parent has?  How do you manage to try to continue “normal activities” when things are no longer “normal?”  It’s just an awful agonizing time that we all can attest to. 

 As I was saying, up until a few weeks ago, things were pretty normal.  However, when we were out of town in Mt. Airy, NC attending a relative’s funeral, Billy suffered a mini-stroke.  Actually this was his second mini stroke, but we didn’t attribute the first one to AFIB.  Thank God no definite damage resulted.  However, Billy  had been diagnosed with Atrial Fibrillation years ago now, but we chose to take 2 mini-aspirins daily instead of going on an anti-coagulant.  That worked well for years, then all of a sudden this happened.  We were preparing to drive home early on May 25th, when I heard a “thud”.  It was Billy.  He started to slur his speech, become dizzy, and couldn’t walk, and his fingers felt numb.  His mouth was drawing down on the left side as he was trying to speak.  I knew he was having a stroke, and I had 7 mini-aspirins in my purse.  I quickly gave them to him and called 911.  The hospital was only about 4 blocks from the hotel, and the rescue squad was there in about 2 minutes.  From there Billy was taken to the ER and then admitted to the Northern Surry Hospital where he underwent several tests, plus a heart specialist was called in.  The hospital started him on an anti-coagulant, Xarelto, plus a blood-pressure medicine.  As soon as we returned home, we went to our GP who immediately checked out Billy, and then referred him to a heart specialist. 

Here is an excellent site that shows all the body parts.  I've chosen the heart as an example, but you can key in any part of the anatomy you wish, and you'll be amazed as to how we really are "knit together"! 

So presently, Billy has had 3 consultations with Dr. Herre, the specialist and is due to meet with him again on the 6th of July.  They want to try to control his AFIB with meds instead of doing anything that involves surgery.  Now, I’m a bit uneasy about controlling something with meds as opposed to having a defibrillator placed in his chest, but I haven’t done enough research to think I can tell this doctor what I THINK HE SHOULD DO!  However, we don’t want to have any doctor that we can’t have honest and open conversations with and that won’t take the time to answer our questions.  So far—so good.   Incidentally, the heart doctor recommends a blood pressure monitor with a “wave” length.  He says they are more costly, but the most accurate.  Moreover, he said the ones that are worn on the wrist are not reliable.  He says we definitely need one with a cuff.  So I offer that advice for anyone that needs to monitor their blood pressure on a regular basis, which the specialist now wants Billy to do. 

Now one interesting thing to put in at this point.  When we were at the hospital in Mt. Airy, the heart doctor that had been called in was very interested to know about the Ivor Lewis Minimally Invasive Esophagectomy (MIE) that Dr. Luketich pioneered back in the mid-90s.  It so happens that the doctor’s grandfather had died of Esophageal Cancer, and the doctor was thrilled to know about the laparoscopic procedure and surprised to see Bill as such a “fine specimen” for someone now 80 years old.  But he did inform us of the increased possibility of larger strokes in the future because of the AFIB condition as possibilities increase with age.  The doctor wrote down the name of the surgery and Dr. Luketich’s name.  He said when he meets anyone else with Esophageal Cancer that he is going to recommend they consult with Dr. Luketich, so even at the Mt. Airy hospital we were able to share our story.  Actually, the heart doctor here, Dr. Herre, said that this AFIB could have easily begun at the time of Billy's surgery, since the heart and the Esophagus are in such close proximity.  Billy had told him, "I've had an irregular heartbeat all my life."  The doctor grinned, and just said, "Most likely you haven't!" 

But one thing I still must say, we never like to say Billy is cured.  He once asked our oncologist, “Should I say I’m cured?”  Dr. Conkling said, “I’d prefer you say you’re in remission!”  Now that was an honest answer, so we’re always mindful that we are blessed to be this far along with a diagnosis that could have turned out very much the opposite.  I still remember our first visit with this oncologist.  I asked, “How long do you think Billy will live if we do nothing?”  He said, “Possibly 18 months!”  We were so naïve.  And it took us about a week after meeting with him to decide to go ahead and have pre-op chemo and radiation.  Talk about not knowing anything.  We were prime examples!  That’s why we’re so adamant that “newbies” get themselves up to speed quickly, and find out exactly what they need to do.  That has been our whole aim here.   

And I will tell you that just like Rob, Billy does still have bouts with waking up during the night with acid reflux.  But often he is his own worst enemy for eating too much too late at night.  You know the rule—nothing to eat 3 hours prior to bedtime.  And also, never lie down for at least an hour after one has eaten during the day.  (No afternoon siestas!)  It is difficult to get in all those small meals and then remember to drink water in between.  But that’s part of the “new normal” and we won’t complain because he is alive!  He has maintained a weight of between 205 and 215.  He eats anything he wants now, but just can’t eat as much at one time. And only his age has “slowed him down”.  He regained all his energy within the year following his surgery back in 2003.   

We really are more in love and in tune with each other’s needs than ever before.  Our trust in God’s guidance has increased.  We give Him the credit for our success so far and trust Him for all that follows.  Now that I have finally finished this “short how-do-you-do” letter, I see that the calendar has clicked off another day.  It’s now the wee hours of Sunday morning, but when I started, it was July 1st.  In essence we celebrate each day we’re alive now, like never before, as I’m sure you and Rob do as well.  And it’s been good to read your message to Amie and Dustin.  It will be an encouragement to them to “keep hope alive”.  May God continue to bless you my dear friend.

Most sincerely,

Loretta (& Willam) Marshall

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  1.  http://www.gomn.com/news/mayo-clinic-says-get-a-second-opinion-first-ones-are-frequently-wrong/

Mayo Clinic says get a second opinion – first ones are frequently wrong

by Melissa Turtinen - April 4, 2017 12:17 pm

“If you’re diagnosed with an illness, you might want to get a second opinion.

The Mayo Clinic in Rochester did a study (published in a medical journal Tuesday) and found as many as 88 percent of patients who came to the clinic for a second opinion for a complex condition left with a new or more refined diagnosis, a news release says.

The Mayo Clinic says a different or more detailed diagnosis can change someone’s care plan “and potentially their lives.”

The study looked at 286 patients who were referred from primary care providers to Mayo Clinic’s General Internal Medicine Division in Rochester between Jan. 1, 2009, and Dec. 31, 2010. Here’s how the types of diagnostic errors breaks down:

  • Only 12 percent of patients left the Mayo Clinic with the same diagnosis.
  • In 21 percent of cases, the diagnosis was changed completely.
  • In 66 percent of patients, their diagnosis was refined or redefined…”

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Comments

  • mardigras
    mardigras Member Posts: 215 Member
    #2
    How wonderful to hear from you Loretta

    Hello Loretta and William,

    I can't tell you what a treat it was to receive your newsy letter, thank you so much.

    You have certainly had your fair share of troubles over the past six years and as usual have dealt with them all in your own indomitable style. It is an inspiration for us all.

    There have been some surprises for me too. Two mini stokes and a diagnosis of an MPN were a bit if a shock. Nothing they can do for my MPN, it's chronic I'm afraid, but hopefully it will not progress too quickly. Now I am undergoing heart tests. The fatigue is the kicker isn't it.

    It all comes with age I suppose and I feel grateful that I was well whilst Rob underwent his struggles and was able, (with a lot of help from all my CSN friends), to cope with what transpired. Rob is one of those, 'head in the sand' people that you mention,  and I would have been so alone without you all.

    A dear friend of mine, Gina, has a niece with two little children. She has a brain tumour and was in remission for several years. Now it has come back and she is not doing very well. My friend Gina says that she can see the writing on the wall, so I have encouraged her to go to the CSN website for some help. Please will you pray for Carimay and her little family that someone might point her in a direction where she can get some help. She is so very young. I really would appreciate it.

    I will pray for your long long summer and hope that you and William will keep as well as you can and happy.

    Thank you again, my dear friend for all of your help and support.

    Many God continue to bless you both.

    Hugs and prayers,

    Marcia x

     

     

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