waiting for the CT scan

Steph_mom · Regular Joined: 17 Sep 2007 Posts: 10 Location: LOUISIANA

My husband was diagnosed on July 17th Stage IV – he is 47 years old. He has been on Chemo every other week with the last treatment on 9/21. The stint will be replaced on 9/28 with the CT scan to follow.

I am still in shock over all of this. My husband is not over weight, not diabetic, no family history, not a smoker, hard working, and exercising man. We have a 19 month old son who looks just like him and loves his Daddy. I am asking the same questions as everyone else why?? We believe in God and know it is his will and his plan not ours, but sometimes it is hard to except. I don’t know about the others but I am really tired of hearing “God only gives you what you can handle” I know this is true, but for some reason it doesn’t make it any easier. Like my husband tells me “I can’t describe how bad I feel you would have to go through it yourself to understand.” I think the same it true for the caregiver you don’t know how bad it really is till you have to live it yourself.

I am concerned with the pain and nausea – the pain seems to be escalating and he is getting discouraged. He takes MS Contin every 8 hours with Lortab for the break through pain and the nausea is constant although he has only thrown-up a few times. The doctor said it is his liver creating the nausea and not the Chemo. He is on 2 different medications for the nausea, but it only lets up for a few hours at a time on some days.
Is this normal for PC?

JenniferS · Regular Joined: 14 Jan 2007 Posts: 15

I am so very sorry to hear about your husband. Sometimes there are simply no words to describe the devastation you must be feeling. Your post brought tears to my eyes.

Similar to your husband, my wonderful mother had just turned 68 when she died on January 29, 2007. She was only diagnosed in November 2006. She was always healthy as a horse, exercised, was super active, not diabetic, not overweight. It was utterly shocking and I am still reeling every single day from my loss. I have a beautiful son who is 2 years old and he helps my husband and I get through the days.

While I cannot answer you specifically about the nausea, I can tell you that my mom never had it and she never did any chemo at all for what that is worth. She had absolutely no energy and took a lot of herbs (eastern medicine treatment) which seemed to stave off the pain which we were incredibly grateful for....

In regards to "God only gives you what you can handle".....I am so mad for you right now. I was told the same thing and I'm sorry, while it may be true, it's a crappy thing to say. Period. I am a Christian but even my own minister told me that people try to find justification and rationale in everything and sometimes there just isn't any and that is ok.

If you ever need to talk or to rant or just to have an outlet, please feel free to contact me at any time. My email is jrseu71@yahoo.com.

Jennifer

freeio · Posted: Mon Sep 17, 2007 11:04 pm Post subject: Nausea

I am very sorry to hear about your husband. Pancreatic cancer is a very difficult diagnosis, and one which has no upside. I was diagnosed three years ago, and while I am still alive and able to use this computer, it has been a very hard trip.

Let me give you a thought as to nausea. Bear in mind that the pain medications cause a great slowing to all smooth muscle function, and most notably to the intestines. I had terrible weight loss because I could not eat, and could not keep much down, because I was completely constipated. This is normal with oxycontin and its cousins. In order to help with this, my gastroenterologist prescribed Glycolax (polyethylene 3350), 17 grams in a glass of fruit juice, four times a day. This worked, slowly, but well enough that within a few days things were moving well enough that I could eat again. There is at least some possibility that pain medication induced constipation may be at least a part of the problem.

As to what is normal for PC, there is no normal. PC can express itself in so many ways that the symptoms can vary widely. To give you a bit of a view into my situation, it has spread from the pancreas to the liver, lungs, lymph nodes, periteneum, and the bones of my back and ribs. Each of these has its own symptoms, and none of it really "looks like Pancreatic cancer."

For a view into my three year journey through pancreatic cancer, check out my cancer blog listed below. There are frank discussions there on subjects which may be of help, and I pull no punches. I am into my final home stretch before I get to go Home, and while everything physically has gone all wrong, yet the Lord has blessed us through it all.

Marty
_________________
-------------------------------------------------
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

Keith · Regular Joined: 30 Aug 2007 Posts: 13

Wow, we have so many similarities. My wife, Gayle, is 54. Right now her liver is under attack with several lesions, the largest being about .75 of an inch. She developed jaundice just this week. She has nausea everyday and was scriped Zofran today. She takes 3-4 10 mg. Lortabs daily and that seems to help the nausea. Doctor said today that if her pain gets worse, she needs a more long lasting pain killer. I pray for your husband and for peace.
Keith

Steph_mom · Regular Joined: 17 Sep 2007 Posts: 10 Location: LOUISIANA

Thank you for your responses.

My husband (Kurt) was up all night with headaches and wants to stop the Chemo altogether. It is so hard for me not to be self serving and respect his decisions.

I have called the doctor and we have an appointment this afternoon to discuss things.

Thanks again for the support and information.

Big Sister · Experienced user Joined: 02 Nov 2006 Posts: 68

Hello -- It's been a while since I wrote and in my dreams I had hoped that there would be no more stories, no more diagnoses to think about or lives to worry about.

Not to be on this forum, I fear.

I send warmest regards to Marty (Freeio) who has hung in there with all of us through these many months. His story gives inspiration to all, whether we are the victims or the loved ones. Marty, your journey has been more than most humans can endure, yet you approach each day with optimism and a degree of peace that we can only hope for. Thanks for that.

Perhaps it's easier to be the victim. I recall when my brother was dying and we were playing cards to lighten the hours, I told him that he was in good company, that the fine tenor Luciano Pavarotti had the same disease. Without missing a gin trick, he simply said, "Poor guy."

For Geoff it was 8 weeks from diagnosis to death. Eight weeks from 250 pounds to 120. The weeks were horrid and pain filled; his spirits, however, remained hopeful, almost as though it were a surprise that he had been so caught off guard that way. A Vietnam veteran, my brother had always felt the worst of life was behind him. Perhaps it was and perhaps this was the Lord's way of bringing him home quickly.

Many times I have written in my own anguish about anger, about fear, about the terror of his days ahead. But for my brother, age 61 and healthy, his days numbered exactly 56 from start to finish. And although we grieved deeply and wept bitter tears, his legacy goes on: I have written two published essays about his life and passing; my niece has made a career choice based on her dad's recommendations; we have all found a renewed love of music, some of us even joining a county-wide chorus so late in life to celebrate human community in that way.

Right now these days are the most difficult. Your emotions are in turmoil. Your denial is acute. Your sense of helplessness overpowering. You are trying so very hard to hang on to someone you love, hanging on with all your might and hoping medicine will help in the rescue.

Take a deep breath: This disease is unrelenting. It is insidious. It is the devil's own work. It is a disease that robs a full-measured person of all his or her stuff, leaving just a fragment of a person we all loved. Medicine will control symptoms, will help pain, will allow sleep, will aid nausea, will give momentary hope. Medicine will not cure this one.

You will hear multitudes of trite phrases from friends and neighbors about God and heaven and about what you can handle. Please understand that words are useless now and that people are just trying to be kind.

I advise you to spend all the time you have left reading together, playing cards together, listening to music together, talking about your lives together. If he/she is able, go for long walks or a drive in the country. Watch the leaves as they begin to fall. If there's time or energy, try to begin making last arrangements so that your loved one's wishes are met. Denial never helps in these cases no matter what we might wish or hope for.

I send my best wishes to you in your struggle; please know that everyone who writes on this forum has already been there.

Pat

freeio · Posted: Tue Sep 18, 2007 11:15 am Post subject: Pat is right

Pat is right. In many respects, it is easier to be the patient than the caregiver. As the patient, as a very happy Baptist, I am not worried about me. My future is assured. Rather, my concern is that this is a very hard path for my beloved wife Monica. After 36 years of marriage, we have been through a lot, but never anything like this. Her hurt alarms me more than my own pain does.

I do have this one consolation, though. At least my pancreatic cancer is "merely" a total body failure. It is not as if it were something really negative like a moral or spiritual problem. Why do I have PC? Well, it is not from doing anything wrong. People have asked me, "Why me?" and I have to reply that I do not know, but that I can scarcely think that I ought to be somehow immune from this sort of thing. I trust the Lord with the whole matter, and simply ask that He use this mess for His own purposes. Is that hard to do? Well, of course it is, but if I have served Him this long, why not follow through and trust Him with my hardest time as well?

Marty
_________________
-------------------------------------------------
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

Keith · Regular Joined: 30 Aug 2007 Posts: 13

It's the 24th and I just saw your post. My wife, Gayle, has been horribly nauseated for the past week. On Saturday I had a doctor friend get involved and on Saturday we had hospice nurses come to the house and give her IV electrolytes, and two injecctions of Zofran. That perked her up for a few hours. Today, Monday, she was weak so I had home health come back and give her another IV of electrolytes plus an injection of Zofran. She's not recovering very well. She stays sick with nausea all the time. Today she had a piece of toast maybe five Wheat thins with peanut butter over the course of the afternoon. All this to say that she is wasting away before my eyes and there is nothing more I can do that I'm not doing. I feel your frustration and in the same shoes.

Keith

Steph_mom · Regular Joined: 17 Sep 2007 Posts: 10 Location: LOUISIANA

We have stopped Chemo and Hospice is now involved –

He is up and getting around, although still nauseated when he eats and the pain seems to be escalating in his upper abdomen. I hope that Hospice will have some new pain management options for Kurt.

I am trying not to fall in to a false since of security that his PC is gone… He feels good and is more like his old self. We are enjoying our time and making the best of every moment.

I can’t say thanks enough for the support.

Big Sister · Experienced user Joined: 02 Nov 2006 Posts: 68

Hello Steph Mom,

Your news about Kurt is certainly welcome but I agree -- don't expect a miracle at this point.

Perhaps when you can you will go to my post of some months ago called "The End -- Thoughts on a Loved One's Dying." So many people have written on this forum about "the end" and "How will I know?" that I took the liberty if sharing my own journey. I expected no replies and received very few, but the number of readers indicated to me that perhaps it was helpful.

Though Kurt may rally and suddenly seem like his old self, a quick read of my original post may help in the days ahead. For you and him I wish easy days but sadly there are no happy endings on this forum. A deep breath and solid preparation is the best advice I can give while you both savor these hours.

My prayers are with you.

brainman · Posted: Wed Sep 26, 2007 4:09 pm Post subject: Re: waiting for the CT scan

Steph_mom, I have been following your story since you first posted. I just wanted to say that you need to make the most out of these good (or at least better) days. Ask your husband what he would like to do and do everything in your power to make it happen. You are his "dream factory." Make his dreams come true.

I have and will continue to hold you and your husband in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

pctx · New User Joined: 06 Oct 2007 Posts: 3

I won't say too much.... except that I am also 47, and my wife has PC...

We stopped chemo 6-weeks ago.. and now I am not sure what we are doing.. just waiting for the end I guess..

She was diagnosed stage IVb in Dec. 2006, 10 months ago..

We are in Dallas, TX

Keith · Regular Joined: 30 Aug 2007 Posts: 13

PCTX: I know where you are in this. My wife 54) was diagnosed around Feb 12, 2007 and is still going. We've had a lot of setbacks, including jaundice, loop colostomy (tumor on her colon), bile duct stents (2) and now a catheter because a tumor is pressing on her bladder. She started a second round of chemo today after being off for two months because of these various complications. The oncologist didn't seem very hopeful, but is doing this because she asked for it. We'll see how it goes. Keep praying and knowing in faith that there are others just like yourself. Like the guys and gals in this forum. I'll be praying for you both.

Keith

Steph_mom · Regular Joined: 17 Sep 2007 Posts: 10 Location: LOUISIANA

PCTX --

My Husband has stopped Chemo for 3 weeks now and I am not sure of what we are doing also... just hanging in. He has had good days where I think everything is back to normal and then he has been so sick that I just want to pull my hair out in frustration.

I find myself wondering what, when, how -- and then I know that I must make the best of every second on the days that are good and pray every moment when the days are bad.

We are all strong compassionate people -- or this path would not be ours.

Steph_mom

Steph_mom · Regular Joined: 17 Sep 2007 Posts: 10 Location: LOUISIANA

Hello everyone --

Kurt is no longer in pain -- he died Saturday the 27th... I was alone with him and holding his hand in the final moments. I love and miss him so much, but the pain is over and he is in a better place.

Thanks to everyone for their support.

Stepheny
Steph_mom

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