Maybe not such good news after all

Hi all...I had started another thread entitled "Good News" about two months ago because my husband, who had been previously diagnosed with Stage IV inoperable pancreas cancer, had after a year of treatment been deemed resectable after all.  On Sept 10th he underwent the Whipple procedure to remove a tumor on the head of his pancreas plus his gall bladder and parts of his stomach and intestines.  His bile duct was reconnected to his stomach.  We had been told he would be in the hospital for a week to 10 days.  Well, he ended up being in the  hospital for 40 days during which time he had to have his feeding tube removed in order for a larger one to be inserted after which he developed an infection.  So about 2 weeks was added to his stay because of these setbacks.  He was finally discharged but still with his feeding tube and stomach drain tube. 
I'm not so sure we did the right thing with this Whipple after all.  My husband still can't eat so I don't prepare meals the way I used to.  he can't work either.  I see him going downhill physically and mentally everyday.  he is constantly nauseated and experiences a bout of dry heaves at least once a day.  He is depressed, also.  This may sound crazy but he actually had a better quality of life before the surgery. Except for a few days of sickness after his chemo he at least was still able to work and eat and (this may be TMI) but he still felt like loving me.  He told me today that he could feel himself going down and that he feels depressed. 

anyone else have any advice or encouragement for us?

Recovery from the whipple is quite slow i've had the surgery. Full fluids and very small meals. vitamin supplements. no  red meat chicken and fish steamed if possible . no fried foods. Its painful i took gravol and oxycodone  for pain for 4months then worked my way down to tylenol.  Small steps rest and rest. After 2 months take short walks preferably where there is a place to sit down. I'm back to work part time  it took 6 months then i went modified then to regular hours. Each person is different my husband listened and comforted me for 4 months then pushed for small steps. I hope and pray you will recover. Your not alone Shelley

possumvalley,

I understand about depression, nausea and associated issues post-Whipple.  Maybe if you can just hang on to the idea that this surgery is the only possible cure for pc, it will help both of you get through this tough part.  Even though his quality of life may have been better prior to surgery, there is no guarantee that it would have lasted.  No doubt the disease would have progressed and he would have felt worse.  He needs to get used to his new normal, his new 'plumbing', as it were.  He should try to eat small amounts of food he likes, whatever it may be.  It is very important to try to gain back some weight.  When the tube is gone, he will need to take Nexium to keep down the stomach acid and he will also need enzymes prior to any food intake.  Without enzymes, any food intake will not be properly assimilated to be used as his body needs it to be used.  High calorie food, when he can eat, such as shakes with added protein.  Also soft scrambled eggs with cheese, coffee with whole milk or 1/2 and 1/2, mac and cheese, cream soups made with 1/2 and 1/2, mashed potatoes made with butter and 1/2 and 1/2.  Give him whatever he likes.

You might visit the Johns Hopkins online pc website.  There are both caregivers and patients who are compassionate and have much knowledge.  It's also good for venting.  You can get lots of good advice and help there.

Good luck.

Joan L

Thanks Joan and Shelly for the encouragement but he can't eat anything at all right now.  He is on continuous tube feeding.  He has recently become dehydrated and his BP started bottoming out upon standing so we've had to increase his fluid intake from 100cc flushes every 4 hours to 250cc's (in 3 small increments).  Hopefully we'll see improvement in a few days.  He is also undergoing some PT that he can do while sitting to help improve his muscle tone and strength since he hasn't been able to walk much lately.

Oh, and Joan, I've tried the Johns Hopkins site but find it very difficult to navigate so I'll stick with this one

Hi possumvalley, I just joined this site specifically to reply to your posting.  I found it this morning while searching around the internet.  I hope you can print this out to let your husband read.  Since I don't know his name, I'll call him John.

Hi John, my name is Kathy and I live in Florida.  I'm 37 years old and just had the Whipple on August 31st....so I'm about 10 days ahead of you.  Do not worry too much about sinking into depression - it happens and is perfectly normal.  There are so many days (too many) when it feels like you'll never be normal again.  I know, because I've had those days too.  I've had setbacks myself.  As a matter of fact, Ambient Nursing came out to my home today to hook me up to a feeding pump because I'm having increased nausea upon eating. 

The biggest lesson I have learned is to not let the pain get out of hand.  I hope your surgeon as prescribec Oxycodone for you.  Not only will it help with pain, but it also helps with the depression.  As they told me from the beginning, don't worry about becoming addicted - we'll deal with that later.  And it's true.  That is the "least" of your worries.  Take the painkillers, and take them as often as you can.  If he hasn't prescribed it by now, ask for it in liquid form to be given through the J-Tube.  It acts within seconds and lasts the longest.  I assure you this will help with the depression as well.

Those danged drainage tubes really suck, don't they (no pun intended) LOL.  But don't fret about that because they "will" be removed eventually.  And believe it or not, it doesn't hurt at all when they come out!  I came home with 2 drainage tubes.  After a while, the surgeon removed one and I was left with the other one.  But it was eventually removed - and yours will be too.  It's not forever.  Just remember that.  As hard as it is to go through, you "must" tell yourself that "it's not forever."  I would be willing to bet money on the fact that in 2 weeks from now, you will be feeling 50% better than you do today.

I'll also share another tip I learned:  I take anti nausea (25mg of Promethazine) and anti spasm (20mg of Dicyclomine) about 30 minutes before I eat a meal.  Unfortunately I learned that trick a little too late and ended up dropping too much weight, which is why my doctor is bulking me up quick with these feedings through the tube right now.  But when you do start eating, make sure you have those medicines handy. 

And as you have heard before, everyone progresses at different rates.  You are not going to be an 80 year old man, rocking in a rocking chair somewhere with drainage tubes coming out of your belly and being fed through the feeding tube.  You "will" heal from this....and you are within weeks now of starting to feel better overall....I promise. 

Possum:  Of course he can't work at this point.  I'm going to be out for at least another month myself due to this setback.  I don't know of anyone that has returned to work at under 2 months post Whipple.  They say you can expect one month of recuperation for every hour in surgery.  So if his surgery was 8 hours, expect 8 months before he really feels normal again.  They say this surgery is one of the hardest surgeries for the human body to endure, and I believe them!  I don't feel too much like loving my husband either because I don't feel well.  Thank God for loving spouses.  It sounds like you are as caring, loving and concerned for your husband as my husband is for me.  I couldn't get through this without him.

So, those are my words of encouragement.  If you want to meet me and my family & friends, you can visit my Caring Bridge site: http://www.caringbridge.org/visit/kathyjcochran

You'll even see pics of my belly post-Whipple, that I'm sure will look quite familiar.

I wish you guys the absolute BEST, and will keep you in my prayers (as John and Possum) *smile*

Take care,

Kathy

Hi - I'm a little ahead of both of you - I had my whipple on May 5/09.  The one thing my surgeon kept saying to me was "your best time today - will be your worst time next week" and it just keeps getting better.  My surgery was 7 hours and I was back at work at 3 months - it was weeks 6 & 7 where I really started feeling the improvements - being able to eat ect.  There's no doubt it is a bit of a roller coaster ride - but it is so important to try and keep your spirits up.  Take one day at a time and you will get thru this! It'll be 7 months tomorrow and I'm able to eat anything - have put back all my weight - plus :(  

I'm just now trying to get thru this chemo (finish Dec 18) and I am ready for an amazing 2010!  My thoughts are with you both!

Hi Vancouver1, that's a GREAT way to put it.....about the best day this week being your worst day next week.  It is sooooo true.  I really noticed a difference in my energy level these past 2 weeks (weeks 7-9).  I don't sleep as much and don't tire as easily. 

I know "John" (as I am calling him) can't eat right now because he's on constant tube feedings, but I wanted to share a few eating tips for when he is ready.

When I first started eating, the doctor had me on no fat/no sugar foods.  This is what we found, and what I was able to keep down:  Sugar free popsicles, Sugar free Jello, plain grits, fat free saltine crackers, Sugar free Wyler's lemonade, and Sugar free Jello Instant pudding (the chocolate is the best! Use fat free half & half to make).  All of these things are sugar and fat free.

Even though "John" is receiving nutrition through his feeding tube, he should still be allowed to eat things, if he can tolerate them.  You might want to try the fat free saltines.  They're really good and I couldn't tell the difference between them vs. regular saltines.  You should be able to buy Wyler's sugar-free pink lemonade at any grocery store.  It's a powder you mix with water.  Easy and very refreshing to the mouth, especially when you're not taking much orally.

Then I progressed to low fat/low sugar:  Boiled chicken breast (add salt, pepper, sage & garlic powder) and steamed green beans were my favorites.  Use the spray "I can't believe it's not butter on it).  There's a ton of information on low fat & low sugar foods to eat.  Basically, you stick to foods that are okay for a diabetic.

And remember, dehydration makes nausea worse.  I'm sure that's playing a part in this.  Hopefully with the increased flushes, he'll feel better.

But as I said before:  Ask your doctor to prescribe liquid Oxycodone to be given through the feeding tube.  Forget the pills.  The liquid acts within seconds of putting it in with the syringe, lasts the longest amount of time and it truly helps with the depression.  If the doctor hesitates with this request, be firm - adamant that you want to give it a try. 

Kathy 

Thanks Kathy,

I wasn't  able to eat for the first 5 weeks - nothing seemed to go down - but I didn't need a feeding tube so I must have been getting enough.  It was the 6th week where it changed - the food started going down in small amounts.  I think I had it pretty easy compared to some people - my body just seemed to adjust to everything. 

Sandra

Yes Sandra, everyone is different.  Unfortunately, no one can guarantee how quickly you will progress after a Whipple.

By the way, I totally forgot to mention the broth for "John and Possum."  When he is able to tolerate it, and the doctor suggests trying chicken and beef broth...... don't just give him the standard Swanson or Cambell's broth.  Switch it up a bit so it's not predictable and he has something to look forward to.  Heat up a can of Cambell's Chicken & Won Ton soup, then drain the Won Tons out and serve him the broth in a coffee mug.  And heat up a can of Cambell's Vegetable Beef soup (again, drain out the veggies and beef) and put the broth in a coffee mug.  Possum, you can eat the Won Tons, veggies and beef yourself, or give them to your dog with his dinner.  Whatever.  The point is to keep it different each time you give your husband something.  Believe it or not, something as small as changing broth flavors will help keep his spirits up because he has something different to look forward to.

Kathy