Gunnerbean2~U R on the wrong forum~however my husband is 14-yr survivor of Gastric Cancer~hope my in

LorettaMarshall
LorettaMarshall Member Posts: 662 Member

 Dear Gunnerboat (aka) “Rainbow”

           Would that you could see a rainbow through your tears!  While you say you “stumbled upon this site”, could it have been “divine providence!”  Most likely!  So after I say a few “opening remarks”, I will copy the letter I wrote to another person on the Esophageal Cancer site.  So just click on the blue box on the left where my picture is and you can read a little bit more “about me!”  First, I didn’t “just happen” to find this site this morning, I purposefully came here to see if there was someone I could help today.  And so that read on.  By now you have probably returned from your husband’s first chemo treatment, and you’re wondering what is going to happen.  When you read the two links from “chemocare.com” site for the 2 drugs that have been prescribed, you will be aware of what MAY happen.  They are “not a piece of cake” but you have to do what you have to do!”  But please get that 2nd opinion ASAP.  My husband had his chemo treatments locally, but traveled to the University of Pittsburgh Medical Center for his Ivor Lewis Minimally Invasive Esophagectomy.  There was no one here who knew how to perform that surgery.  Moreover, when surgery is an option, you need to go where the medical facility makes Gastric cancers one of their specialties and that the surgeons perform hundreds of this type of surgery, not just “now and then.”

           First, don’t grieve about not being able to get into the CTCA, they are NOT the number one cancer center in America, they just have a lot of money to advertise.  And your husband isn’t the first serviceperson to not be able to get treatment there.  And so, since my husband and I just finished sending 175 cards to an organization in Maryland who sends cards and gifts to service personnel who are away from home at Christmas, I will print a copy of our letter of thanks here.  It expresses our feelings and so first thank you for the sacrifices that you and your husband have made to serve the greatest country in the world.  Fortunately, we were able to get large cards with a blank page.  We were able to get this message to our beloved and often “unappreciated” military members who will “not be home this Christmas.”

 __________________________________________________________________

 HERE IS A COPY OF THE WORDS WE PUT ON EACH CARD.

 “We live in Va. Bch. near Oceana, the only Master naval jet base on the East Coast.   SEAL TEAM 6 located in Dam Neck and Oceana is our pride and joy.  Tidewater hosts the largest naval station in the U.S.  So you can see why we so honor our military!  Members of our own family have fought and died in combat to keep our country safe!

 Especially in this Christmas season, we must tell you how much we appreciate your service and your sacrifice to our country.  Your families make a sacrifice as well.  Long deployments cause families to be apart from their loved ones and friends.  Families share special joys at Christmas time.

 We very much support the programs outlined by our new president to be, Donald J. Trump.  He plans to upgrade our military ranks, increase our naval fleet, and build new airplanes.  We should not put our military force out to fight a war in which the enemy may well have better equipment than you do.  He plans to honor your service by making opportunities available for employment when you return home.  He will allow all the veterans to receive timely adequate medical care close to their home.  No more long waits to get help you deserve. 

 Once more we’re about to celebrate Thanksgiving and Christmas.  Our forefathers were willing to give their life to secure freedoms which all too many take for granted.  Greater love has no man than this, that he lay down his life for his friends.  Your willingness to serve means that you have voluntarily put yourself in a position just like that.  Life is precious and peace is fragile.  The best news is that we still live in the greatest country on earth.

 God has truly blessed the USA.  We deplore those that do not salute the flag for which you are willing to die.  Far too many have forgotten the true cost of freedom!  We’re reminded at this holiday season that Jesus is the reason for the season.  May you have His heartfelt peace in your heart even though you’re far away from those you love.   We sure hope this time next year, you’ll be texting a message from your smart phone, saying “I’ll be home for Christmas.”  Thanks again for keeping our family safe.

 MERRY CHRISTMAS 2016 -   Loretta and Billy Marshall

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         Now that we’re on the same page, let’s continue.  For the sake of having everything on one page, I will print the answer I gave to another person that was “newly diagnosed” on the Esophageal Cancer page.  This will be quite long.  You see I think your husband needs a SECOND OPINION right away, and because he is a veteran, his options are limited as to where he can go and be treated UNFORTUNATELY!  That said, I notice you use the personal pronoun “we” instead of “he”.  I know why—because when “he” has cancer, “you” have cancer!  And your fears about your own children and sweet grandchild loom large.  When my husband was first diagnosed with Esophageal Cancer, Stage III (T3N1M0), we were into raising our second set of children, 4 grandchildren from the same family.  And the youngest one was 7 years old.  So I know about those fears.  Naturally, the first thing on my mind, and my husband’s was, “How soon will I be a widow?  Who will help me raise these grandchildren?  Well, the Lord didn’t tell me.  He let us go through multiple emotional stages as well as medical treatments.  And as of this day, November 21, 2016, He has not told us when we are going to die.  In effect, He has said, “Don’t bother your pretty little head over things over which you have no control, Loretta!”  And so, today, I am “reduced” to living one moment at a time, one day at a time, and I’ve stopped asking, “When is my husband going to die, and when am I going to die.”  You see one of my favorite sources of comfort is Psalm 139.  Think of your sweet grandchild as you think about what the Psalmist David said.  Paraphrased, he said, “Lord there’s no place that I cannot go that You are not 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 so, “Rainbow”, try to put that question at the bottom of the list.  Only God knows how long any of us will live, and so far, I haven’t had a phone call or a text message, giving me a “heads up!”  So each time this fear rears its ugly head, as it will, I say, “Well that’s up to the Lord, and out of my control.”  And that’s exactly where you must put this “ever-present question” when you’ve just been given this alarming news.  I know “exactly” how you feel.

           And that’s why I checked in this morning, as I often do because, not to be “outdone” by my husband, I, too, was diagnosed with cancer—Peritoneal Carcinomatosis/Ovarian Cancer Stage IV when I went into the emergency room in Thanksgiving of 2012!  I thought I might have a hernia.  A couple of hours later I was given a copy of a CT scan report.  I began to “scan” it knowing that my name was at the top of this report.  And so, yes, I am terminal.  No my cancer will probably not be cured by a miracle in this lifetime.  How long will that be?  Only God knows.  Now He is the Great Physician and can perform a miracle.  But that is His choice, and not mine.  But, He’s gifted us with many great doctors and it’s my prayer that your husband will find the one best suited to treat this cancer.  And even though you wrote on the “Peritoneal Cancer” site, seems that the info you will find on the Esophageal Cancer link might be of more help, since it is a “Gastric cancer link.” 

           Incidentally, my husband only went to the doctor with a hiccup, and came home with a late stage Esophageal Cancer diagnosis.  Very often, someone who suffers with persistent heartburn can actually have Esophageal cancer, and not know it.  They often just try to cure it with something like “Nexium” which can actually mask the symptoms of Esophageal Cancer.  When my husband was diagnosed, all 4 walls of his Esophageal had been infiltrated with the cancer, and was also found in 2 local lymph nodes.   So I’m not quite certain of your husband’s diagnosis, and you aren’t either, are you.  Seems sometimes stomach and esophageal cancer seem to overlap.  When cancer is found in the Gastro-esophageal junction, some doctors treat it as Stomach cancer, while others concentrate on the Esophagus.  I only offer that as to why the two cancers overlap sometimes.  But nevertheless, I’m curious as to where the one cancerous lymph node is found.

          And another piece of advice, make it a habit of asking for a copy of ALL medical tests your husband receives, and analysis, as he has them.  God help us if the veteran can’t even be furnished with a copy of his records.  By now you get the idea that I’m not too keen on how quickly VETS are getting the treatment they so deserve.  But you need to have that complete info in hand when you go for a SECOND opinion.  Sometimes the doctors will ask you to send those records on ahead of the scheduled appointment.  That way they will have had a chance to review your husband’s prior treatments, and could help to speed things along.  Those records are not only governmental records, it is a record of your husband’s life, and as such he shouldn’t have to beg for them.  Nor should he “assume” that if he calls and ask some medical record department that they be “mailed” to the place of your choosing, because that may lie on someone’s desk and not get there on a timely basis.

           Moreover, my husband had chemo and radiation prior to his surgery.  Now I would have no way of knowing whether or not surgery will be an option, but at this point, it should not be ruled “in or out” because of your incomplete findings.  But first off, after a completion of ALL the tests necessary to validate his cancer diagnosis, including the stage, he was given a medi-port.  Then he was sent home with a “fanny pack” of Carboplatin and 5-FU” which he wore for 96 hours.  He had one of those treatments in the first part of a 6-wk. treatment, and another one close to the end.  Then he had a PET/CT scan to review the results.  He also had 25 radiation treatments.  He went in 5 days a week for 5 weeks straight for a short period of radiation.  Now back in 2003, we had no “targeted radiation” equipment here in Tidewater, but by the time I was diagnosed in 2012, I was able to have targeted radiation for 3 cancerous lymph nodes on the Caudate Lobe of my liver.  So while you only speak of chemo, there might be some radiation that could be used as a treatment process as well.  There are treatments short of surgery that can help a patient’s condition.  If no surgery is possible, still “palliative” treatments can offer help and a better quality of life.

           So it seems that your husband’s biggest problem is being able to find the best care at the best place since his choices are “limited”.  Wouldn’t it be ironic if when he was called to serve in Iraq, that he would say, “Sorry sir, but I don’t wish to serve there!”  That would never happen, but now that he needs “service” he is being told, “Sorry sir but we can’t serve you here!”  It’s my prayer that this soon changes. 

          May God bless you and give you direction in these troubled days ahead.  We can’t treat the cancer, but sometimes we can help soothe the soul.

 Sincerely Loretta

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