Throat Cancer

stottsp

Hello!   My husband was diagnosed on March 24, 2016 with Stage 4 throat cancer.  He received 7 chemo treatments and 35 radiation treatments.  The cancer was gone but returned this year in February.  We traveled to UAB to attempt laser surgery but the cancer was too close to the carotid artery.  In April we traveled again to UAB to receive a Free Flap surgery, to remove the voice box, and get a trache tube.  Unfortunatley they couldn't perform this surgery because the cancer has spread onto the carotid artery.  He was sent home with a trache tube and was diagnosed as terminal.  He is now receiving the drug Keytruda to try and buy him some time but we don't see very good results.  Later in August he will reveive a PET scan to determine if the drug is doing any good.  I am the sole caregiver of my husband and his 87 year old Mother who is in failing health.  She lives across the street from us.  My family is pretty much useless and I feel so alone.  I am blessed with many friends and a strong faith in God but lately it is difficult to cope.  My husband gets very nervous if I am gone for more than an hour and only then can I go somewhere close by.  Any suggestions anyone can give are most appreciated.  I am not complaining at all, I feel honored to care for my loved ones.  Just would like someone to chat with.  Thank you.

LorettaMarshall

stottsp~"Alone is NOT a good place 4 U 2 B~U must have some help

Dear “Alone”

Do you mind if I call you “alone”?  You’ve reached out to total strangers, and at last count I note that at the bottom of your letter that so far 47 people have read your letter.  I don’t know how many other replies you will get, but I venture to say, every one of them care, but they possibly can’t find the words to tell you how sorry they are that you find yourself in this situation. 

Moreover, no doubt your husband feels “all alone” too although you two have each other.  As far as your husband not wanting you to be gone for long, that needs to be addressed.  In order to stay sane, you need some time to yourself.  Do you have a church where members might come in and sit with him for several hours at a time?  I had a friend whose mother was a total invalid.  My friend was the “only” child, and the only caregiver for her mom who had polio.  Thank God we now have a vaccine to prevent that.  However, there was “respite” organization that came in and sat with her mother for several hours at a time, so my friend could get a break.  I note there are lots of “respite” organizations around the country.  I don’t know where you live, but if you “key in respite care” on your computer, you will see many organizations that offer “in home” care.  Now while you may not be financially able to afford that kind of care, there are some charitable organizations that will come in for free.  So I would suggest you try to find one.  And by all means, your home church should have some volunteers that could help you out.  Granted your husband may not think it’s a good idea, but although he has the cancer, you are only one person and can only stretch yourself so far—without breaking!  I’m serious about that.  You will have to explain to him that there is a “limit” to your physical capabilities and that your life can’t continue with no help from anyone.  He should think hard about that.  There are two people in this marriage, and while I’m not capable of knowing what he is thinking, he needs to understand that you’ve got to have some help, and some relief—some time away.  And if you can’t make him understand that, then perhaps your pastor could have a talk with him.  Your husband needs to know that there are only so many hours in a day, and you are not a mix between “Superman and Wonderwoman” even though you are trying to be!

Cancer patients are supposed to be paired with a “nurse navigator”.  Have you met one that is assigned to your husband?  Does he/she know of charitable services that can provide you with some help?  They might be able to put you in contact with a respite organization near you that has volunteers.  That would be the best thing I would think.  Here is one such reference that might be a “starting point” for you to get some much-needed rest. 

• https://www.caring.com/articles/respite-care

Sometimes couples can’t really talk about “terminal cancer” and that makes for a strained relationship.  One couple that I know comes to mind.  The wife was diagnosed with a terminal cancer, but the husband just could not talk to her about it on a personal level.  Now he took her to all the right places, and went the last mile to try to find help for her.  But when it came to expressing his “inner feelings” to her, he was simply unable to do so.  And so the wife could not really “share” with him her fears because he had so many of his own.  She had some close friends that she could talk to, but that’s never as good as just pouring out your heart to the one you love and saying all the things you really want to say.  So really, “silence isn’t always golden.” 

 In your case, you certainly are “alone” as far as help from your “useless” (your words) family members are concerned. Now I take it that they are “useless” when it comes to offering their time to help lighten your burden.  We know there is more than one definition of “useless”.  You definitely need some relief.  Sometimes people shy away once they know you have cancer, not so much because they don’t care necessarily, but because they don’t know what to say or do.  Not having met your family, I would hope that some of them could “step up to the plate” and help you out.  You certainly need some help with taking care of your husband’s mother.

You say, “My family is pretty much useless and I feel so alone.”  That’s saying a lot in one sentence.  You don’t have to go into detail with me, but I’m wondering where are the family members on your husband’s side of the family?  Is he an only child?  Is that the reason you are the sole caregiver for both your husband and your mother-in-law?  What a heavy load to carry? Maybe “your” family members are thinking, “Well, it’s his family—not ours—and they should be the ones helping out with the care of “his” mother.  But if you have children, they should certainly be helping out.  Well you know what I mean.  I’m speaking specifically of helping out with the care of your mother-in-law at this point.  Taking care of an elderly parent is a “full-time” job.

Now I’m not a fortune teller, but if your MIL is 87, there’s a possibility that your husband is probably at least 60 years old.  And if you’re in that age range, you may have medical issues of your own.  Often in cases like this, the caregiver puts their own life on the “back burner” and plods on with what they see that needs to be done.  They say to themselves, “If I don’t do it, then who else will?”  So I can only imagine your own emotional burdens at this time in your life.

Let’s just be honest, I think we both know why it’s getting hard.  You're left with the care of the mother-in-life and her health is fragile.  You and your husband went to UAB thinking there would be some type of helpful surgery, and you’ve come home from Alabama, disappointed with a big “T” for terminal on the top of your husband’s medical report.  Who wouldn’t be hurting and feeling all alone?

My husband had surgery at the University of Pittsburgh Medical Center.  He had Stage III Esophageal Cancer.  He had a successful surgery, but as all EC post-op patients know, you pretty much start out like a baby on soft foods, then “junior” and then regular meals.  That takes a matter of months.  But I remember one day in the cafeteria at the “family house” where we were staying my husband was seated beside another younger man from Guam.  Just like in your case, he had been there a year earlier and had surgery, which resulted in a good portion of his tongue being removed because of cancer. 

But now he was back a year later with a recurrence.  This time he was told there was nothing else that could be done, and he would be returning home to live out his last days as a Stage IV inoperable patient.  I remember thinking how blessed we were to be able to come home with a successful surgery, even though my husband’s first meal was 2 tablespoonsful of Cream of Wheat.  At least we had hope.  At least he could eat normally.  We were coming home to hopefully resume a normal lifestyle, while the young man was going home with just the opposite outlook.

In conversations with the couple, they said they were both Christians and had stated that it was all in the Lord’s hands now.  They were not going to live to a “ripe old age” as man and wife, but they knew that when you “know” the Lord, “HOPE” really does spring eternal.  And since you say you have a deep faith in God, I know that He will be “with you” throughout this “trial by fire.”  I often say, God must have written the song, “I beg your pardon, I didn’t promise you a rose garden.”

I remember an old country preacher relaying a story about a man who was undergoing such a hard time.  He cried out the God, “Oh God what are you doing to me?  And supposedly the Lord said, “Just answering your prayers.”  To which the man responded, “Well if you’ll tell me what I said, I promise never to pray it again!”  Of course, that probably didn’t really happen, but the reason for his telling it was to make the point that Christians are going to go through some painful, distressing, disappointing, dreary and downright awful times down here, but wait…….they possess an eternal hope because God has promised in Hebrews 13:5 that He will NEVER leave them.  Now granted, many are the times when heartaches come that we cry out, “Oh God where are you?”  Truth is He hasn’t really left us, but we have to exercise our faith and not go on “feeling” but remember His promises.  Now I’m just talking to you as I would a Christian sister, and I hope that I don’t get thrown off the site for being so personal, but you say you’re alone, and need to talk to someone.  I don’t ask anyone to believe as I do, but I appreciate the ability to speak freely in the only way I know how since you say you have a deep faith, but lately life is loading you down with burdens.

At this point, I want to share a link with you that you will identify with totally—I do.

1.        https://www.youtube.com/watch?v=so9Yhh__c-8

 This is a young woman who has just begun the ordeal of adjusting to the fact that her husband has been diagnosed with Stage IV Esophageal Cancer.  What she says is so true.    She writes as “JKerry” on the web and has posted a video about her husband’s diagnosis, the future outlook, etc.  She works for the University of South Australia and produces educational online technical videos.  But in this 7-minute video she pours out her heart as to what it feels like in her own words, “Having the future tense stripped out of your language when you’re talking with the person you wanted to spend the rest of your life and now probably can’t makes talking sometimes really awkward. “

 You can see the grief in her eyes and the troubled look on her face.  And if you care to watch it, I believe she voices the frustration of every wife of a Stage IV cancer patient, and also the cancer patient as well, no matter the type of cancer.  Also, from the standpoint of the Stage IV cancer patient themselves.  They both know that their life will not have a “fairy-tale” ending as in “…and they lived happily ever after.” 

Now you don’t have to go into detail about chemo or radiation. We know how that works and the often awful side effects, many of which make you wonder which is worse, the cancer or the chemo.  But all during the time you’re going through that phase, at least you have hope that it will work.  So you “bite the bullet” and “go for it”.  What other choice do you have? 

Now you find that no longer is the tumor “close” to the carotid artery, but it has now attached itself “to” the artery.  Oh what a disappointment.  In an effort to better understand just what’s involved with “throat cancer” I went several places on the web, and I’ll list those places below my name.  You’ve probably already explored every one, but I will put them there just in case.  I found the information very interesting because of the close proximity between the trachea and the Esophagus.  As a Stage IV Peritoneal Carcinomatosis/Ovarian Cancer patient myself, my last CT scan showed a node near my trachea.  I’m acquainted with “creeping cancer”.  I have also put in a link about “body maps” so you can see exactly where your husband’s problem is. 

My only suggestion is that you cling to the Lord and His promises just as you have done thus far.  He will keep your head above water even when you feel like you’re drowning.  During one of my many trials throughout my life, my dear (now departed) mom sent me a letter of comfort and consolation.  On the outside of the envelope were written these words:  “PRAY FOR A FAITH THAT WILL NOT SHRINK WHEN WASHED IN THE WATERS OF AFFLICTION!”  That is my only suggestion.  It has worked for me—so far I’ve managed to survive till age 78!   I choose to believe that He is omniscient, omnipresent and omnipotent.  Although He could heal your husband, me and everyone else in the world, such will be only by divine intervention, and that is His choice—not mine. 

Sincerely,

Loretta

P.S.  Lastly, in looking back through the topics discussed on this forum, I found one by a young man that has survived throat cancer.  He writes on a blog, and I’m certain that he will be able to identify exactly with your problem, and I think he could help you far more than I’ve been able to do.  However, I just can’t bear to see someone write here, tell me they feel so alone, and need someone to talk to—and no one answers.

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Here is his recent entry.

2.       https://csn.cancer.org/node/310873

“Throat Cancer Blog - Jul 17, 2017 - 12:19 pm

Hello. My name is Drew. I was recently pronounced cancer free after being diagnosed with tongue and throat cancer late last year. It has been a hell of a roller coaster ride, but I am happy to be on the other side of this finally and looking forward to the days ahead. I built a blog some time at the end of January to document my entire treatment process including recovery and up to my three month post treatment scan. I am posting this here because I've had a lot of great and positive feedback from people I have shared it with. I wanted it to find its way to people who need it most and hopefully find it inspirational as well as educational. If you have been diagnosed, going through treatment, or know someone who is, please feel free to share this with them. God bless and my best to all of you fighting this disease. 

 Thanks

http://myfightmystory.weebly.com/”

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3.       https://www.gbhealthwatch.com/throatcancer-details.php

THROAT CANCER

 “Another name for this disease is laryngeal cancer. In 2012, about 10,000 men and 3,000 women in the United States will be diagnosed with cancer of the larynx. Most will be over 65 years old…

The Larynx -- The larynx is an organ in your throat. It’s at the front of your neck.

This organ is about 2 inches (5 centimeters) wide, which is about the size of a lime.  The larynx is also called the voice box. It has two bands of muscle that form the vocal cords. The cartilage at the front of the larynx is sometimes called the Adam’s apple.

The larynx has three main parts:

• Top: The top part of the larynx is the supraglottis.
• Middle: The middle part is the glottis. Your vocal cords are in this part.
• Bottom: The bottom part is the subglottis. It connects to the windpipe (trachea)…”

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4.       http://www.healthline.com/human-body-maps/neck

“In Depth: Neck

“…The neck is the start of the spinal column and spinal cord. The spinal column contains about two dozen inter-connected, oddly shaped, bony segments, called vertebrae. The neck contains seven of these, known as the cervical vertebrae. They are the smallest and uppermost vertebrae in the body…

Speech is made possible by critical structures within the neck. The larynx houses the vocal cords, or vocal folds. Sound is generated when these folds come together to produce vibrations. Its movement also manipulates pitch and volume.

The larynx is located where the pharynx, the back of the mouth and nasal cavity, divides into the trachea (the tube that carries air to the lungs) and the esophagus (the tube that carries food to the stomach). That branch occurs near the base of the neck near the collarbones…”

Some health problems that can affect the neck include:  Neck spasm …..Whiplash…..Herniated disc…..Muscle sprain…..Laryngitis…..Airway obstruction…..Vocal cord polyps…..Throat Cancer…Mumps…..Mononucleosis”

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5.       http://www.healthline.com/human-body-maps/common-carotid-artery

[My note: Note the bar at the bottom of the chart.  You can move the bottom bar at any angle and a new part of the anatomy will appear.  Wherever you place your cursor, that part of the anatomy will be defined.]

6.      https://www.keytruda.com/head-and-neck-cancer/

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7.      https://www.keytruda.com/head-and-neck-cancer/what-is-head-and-neck-cancer/

What is head and neck cancer?

“Head and neck cancer” is a term used to describe cancers in and around the head and neck, such as in the throat, lips, gums, tongue, or nose. The specific type of head and neck cancer you have depends on what kinds of cells are affected and where the cancer actually started…”

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8.       https://www.keytruda.com/head-and-neck-cancer/care-and-support/

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9.       https://www.keytruda.com/static/pdf/discussion-guide.pdf

Important questions you may want to ask your doctor when choosing a cancer treatment

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10.  https://www.drugs.com/sfx/keytruda-side-effects.html

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11.  https://www.drugs.com/health-guide/head-and-neck-cancer.html

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Ladylacy

Hi

Sorry to hear about your husband and mother-in-law.  I was the sole caregiver for my husband who was first diagnosed with laryngeal cancer but then a second primary at the cervical of his esophagus and then spread to his lungs.  Caregiving is hard but you need to take time for yourself.  I would barely leave my husband's side as his time grew near.  But I would get out for an hour at a time.  My husband was on in-home hospice for the last 18 months of his life.  Hospice was great and they do provide help and they provide all medication that deals with what they are on hospice for.  If your husband is not on hospice it might be something to look into.  When our doctor suggested it, at first we didn't want it, guess we didn't want to admit he was dying.  

Just remember that taking care of yourself is just as important as taking care of those you love.  It is hard that's for sure.

Wishing you and yours peace and comfort.