Again, all the 'mind-prep' I went through ahead of time was mostly for naught.....I had to ask Tom's brother to drive us today for the radiation and PEG placement. I was too queasy to be sure of myself, and I knew I'd worry about Tom's comfort on the long drive home.
All seems to have gone well; I THINK I understand all the instructions!
We've been given a huge supply of "Jevity 1.5," with instructions to work up to 7 cans a day. Tom's been listed as "Moderately Malnourished," I guess because his weight is down to about 135
This is most distressing to me - just too skinny and his rock-hard arms and legs are gone - - plus he's got nothing left to SIT ON!!!

I guess this is where the real fight begins......God give us strength.

I've been searching through old posts and finding so much great info on the PEG, nutrition, etc. YOu all are just the best.

As always, you are in our prayers daily. With all the recent horrific events in the world, Tom and I still feel blessed and lucky, in relative terms, to be in the situation we find ourselves.
Nicki

Hi Nicki,
If I could suggest one thing it would be to slowly let him adjust to the feedings. Jevity made me quite sick so I had to keep trying different brands until I found one that agreed. It was the Wal-Green brand and much cheaper. I also did very well with the Boost drinks. Boost also has a carbonated drink also that is good to keep the tube clean and clear. That or some good old Coke. We used it all the time when I was still nursing.
I had to use immodium for a few weeks and some pepcid when I started on the feedings. He will adjust but it's better to do it slowly.
Minnie

Hi Nicki,

I had my PEG installed before my surgery. I lost about 25 lbs. in 10 days. When I got home after 7 days in the hospital I was inputting a minimum of 8 cans of Jevity per day. Two cans at a time with one packet of Carnation Instant milk.(Choc)
This added about 400 calories per day plus the two thousand from the Jevity. Had no problems, never threw up once. I gained back 20 lbs in about 6 weeks. The problem was it was all in the belly. I am a small man to begin with so I didn't have alot to lose. I injected the food into the tube with a syringe.
Also my insurance company paid for all the Jevity
and syringes. If Tom needs to eat this way have the Doctor prescribe the food. You should not have to pay for this stuff.

Tom should start eating soft foods as soon as he can. I waited a little to long and I had to have my mouth opening widened. The old adage "Use it or Lose it" I went through PT for this and also used a therybyte device.

Hope all continues to go well with Tom's treatment,

Love Ya, Danny Boy

Hey Nicki,
Hang in there sweetie...I know what you are going thru. I cried and prayed everyday for strength and courage to help Dan get thru all of this. Insurance wouldn't pay for the Boost so our Bible study had a Boost party and they all brought us packs of Boost. It was great. However, Dan couldn't get down 8 cans of BoostPlus a day, so I talked to the Nutritionist and she prescribed Nutren 2.0 which had 500 calories a can, so Dan only had to get 4 minimum down a day. Also, since it was prescribed by the nutritionist to our local Neighborcare, it was covered by insurance. They delivered the Nutren and the syringes to our door. I just called and reordered when he was low. The PEG was a lifesaver for Dan, but if Tom is on major meds, get ahead of the constipation and ask for meds for that...we had a couple of really hard days before it got worked out. Hope this helps.

Also, Dan - how did the therabyte work for you? Dan is having some continued trimus problems. Actually, his jaw has tightened even a little more since we have been in Alabama. He can get PT on his shoulder but they really don't do jaws. He is trying tongue depressors, but is having some trouble. Let me know how the therabyte worked.

Nicki - praying for you guys!
Deb

Nicki -- you guys are warriors... I can relate to not having much to sit on... I remember the first time I kind of rocked back and forth a bit in my chair a few months back and *Crunch*. What was that? A boney backside, that's what. No more cushioning!! It's kind of embarassing...

Keep fightin'!!

Eric

Hi Nicki
God how I feel for you ... this is so hard but, you will get through it. Absolutely the insurance will pay for all his nutritional needs, and if he finds is unable to get enough calories etc. via the PEG they will pay for him to be fed thru his port. One day at a time girl, please take care of yourself.
Marica
---------

Caregiver to husband Pete. SCC base of tongue stage IV. finished treatment 7/04 doing great.

Hi Nicki,

It seems like yesterday...I remember well everything as you describe it. A year later, my butt still hurts when I sit for very long. I already had the Asian no-butt and now it is worse.

Hang in there, it gets tough but it will improve soon. I remember when the Jevity or whatever I had started tasting so bad, I gave it away to the home health care agency (5 cases). A month later I was buying Boost and regretting the extra cost. I never could get up to much more than 5 cans a day without barfing it all out. As someone else said, if it won't stay in, look at feeding through the port (TPN). The portt was a live saver for me and especially on the fluids.

Ed

Heavy sigh........
Thanks for all the helpful advice. Certainly is easier to absorb it all here than sitting in a medical office with nerves blocking your grasp of all that is being said.
I am very relieved that the nutrition needs are covered - I had already purchase some Boost and Ensure (he couldn't stand the taste) and was getting chills thinking of the expense THAT was going to be.
He's just not feeling well at all today - and I think he's only gotten 3 cans down. He says it is all 'gurgling' and I can hear it...so I'm wondering if he might be taking in too much at a time. I suggested he slow down the delivery rate...? He also had a bout of diarrhea today, and I think that is from taking it in too fast,too.

OK, I'm exhausted, so I'll go to bed now. Is it inappropriate for me to mention that I think the worst thing about the PEG is that it makes cuddling difficult, and both of us need a lot of that right now? I'm not one to use ugly language, but this part really s--ks.

Love you all!
Nicki

PS: WHAT IS A PORT (TPN)?????

Nicki
Except for how much this disease can make you realize how many wonderful friends you have and how many compassionate people there are in our crazy mixed up world everything abut it.. s__ks! By the way...I'm glad you recognize your exhaustion...be good to yourself and get rest when you can it is really important as Tom gets increasingly exhausted and you need to be the one to get things done. I find joining Bob in his afternoon naps (on weekends:)wish it could be every day) does wonders in preserving my patience... especially when dealing with health professionals who are doing thier best (GOd bless them) but sometimes not meeting his needs...Love back to You
Denise

Hi Nicki,
Some weight loss is almost inevitable except in some fairly rare cases. Muscle atrophy will happen as well. I carried a seat cushion around with me for months. I have put most of the weight and muscle back on again and left a lot of the fat behind. We did have to shop for new clothes. I went from a 34" waist to 30".

It's a small price to pay for living.

By the way - constipation is worse! Look on the bright side - if the treatment didn't beat you up it's probably not curing anything.

Hi Nicki
I was told it should take a least 20min for a can down the peg, maybe that will help, has he been given medication to help his stomach acid?
Sunshine.. love and hugs
Helen

Nicki,

A "port" is a central access line or a port-a-cath which is either a PIC line that is a long-term IV connection on the arm usually or a surgically implanted device in the shoulder that has a line going just about to the heart. It is used for blood draws, chemo, medication and fluids or anything administered IV. TPN is literally a bag of liquid food that is put straight into the veins. They mix it up based on caloric requirements and includes vitamins and lipids or fats. I was throwing up so much even using the PEG that eventually I started taking fluids and TPN feedings through my port at home. My creatinine was high and since cisplatin is known to cause kidney damage, they felt keeping adequate fluids in me would be the only way to continue treatment. I put in about 3 liters per day for many weeks.

There are some enteral feeding bags you can purchase from the drugstore and you put the Boost or whatever in the bag and connect it to the PEG tube with a controlled drip so it can be as slow as you want. The bag needs to be elevated and we bought a used IV pole for about $35 or you can rent by the month.

Be careful, though, because I was carrying the bag into the bathroom and as I was leaving, I hooked the tube under the door and about halfway through the bathroom I was like a dog running to the end of the leash . Not only did it embarass me, stop me in my tracks but it also hurt like heck. They weren't sure if this broke my ribs or the fall when I blacked out a few weeks later. I think each event broke one.

I had a lot of gurgling and digestive issues from chemo until weeks after radiation ended. I went almost 40 days without eating anything because of it. I vomitted the PEG feedings within 15 minutes of starting no matter how much I put in or how fast. I love the taste of Boost now, though.

God Bless,

Ed

Nicki-

As for cuddling with a peg, I was only married 2 months when my peg was "installed" I was very self-conscious about that tube hanging out of my tummy. I was always afriad it would leak, which it did! But used lots of tape to keep it out of the way and leak-proof. Tape it out of the way and then forget about it!! You both will need all the cuddles you can get through this time - Kris

I'm really weepy tonight. I know I haven't found the time or the place to cry this thing out of me, and I know it wants to come out.
The 1 1/2 hour drive to the radiation center today felt tense because he'd had a bad day..and we hardly spoke on the way home. He HATES for me to ask "Are you OK?" or "Do you need anything?" all the time, but I don't know what else to say....if anything.
I got (very uncharacteristically) upset because when I finally stopped to fill up the tank, the gas price was 10 cents higher than I could have gotten back in town. I can feel tension....UGH!
I hate that!
Tom had been encouraging me to buy a nifty little sports car for 'fun.' I had resisted until BINGO - a very sweet '90 Mercedes 500 SL came into play. All of a sudden, I WANTED something that I hadn't even thought about before. My practical mind took over, and I said
"NO," mostly because I don't know how much this whole 'sick' thing is going to cost us, monetarily......and now I think that is bothering me.
I'm probably not making sense tonight, and I fear I'm whining, so I'll close.
Thanks all for being here.........
Ed, thanks for the education, too! I've told Tom to slow down the feeding, Helen, and hopefully that will help.
He was in LOTS of pain last night.....said it felt like someone kicked him in the kidneys...We think that perhaps because he couldn't drink anything for 18 hours when the PEG was placed, that too much of the chemo settled there???
200 mg of Motrin helped a lot...

Night all...
Nicki

Nicki,

Be sure and have them check Tom's creatinine as soon as possible tomorrow. Cisplatin has been known to cause kidney damage and if the creatinine is high, fluids will have to be put into him soon. I hope they have been checking this and I certainly hope I am not causing you more worry.

Everything you are feeling is what we all go through. My wife and I have talked a lot about the treatment days and I was a real bear with her at times by just not talking and others even worse for the way I talked and the things I said. We tried to find ways for me to ask her for things or tell her how I was so she wouldn't have to ask. After about six months oftelling her how I was she finally told me that she didn't need to know so many details every day . We have many things we look back on and I doubt I really did or said those things but we chuckle now.

Weep all you want whenever you want. This is not an easy road and especially for the caregiver. You are forced to literally lurk in the shadows waiting for the next order or command while all the attention is focused on the patient.

Hang in there, it will get better.

I hope you sleep well, Dear Lady!

Ed

Hi Nicki,
it is crucial that Tom drink (or consume) 2-3 liters of water every day (4-6 12 oz bottles), especially while undergoing chemotherapy. The kidneys really take a beating if you don't. The toxins will make you feel like crap also. When they would rehydrate me I would feel better almost immediately.

I have to admit that I wasn't the most congenial patient - I was ok with the techs, doctors and such but I was hell on my loving, caregiving wife. I have spent a good part of a year making amends to her. Be patient it'll get better.

Nicki,
The PEG is not bad at all once you get used to it. I used to take walks, play golf and do just about anything else I wanted wearing my PEG.MD Anderson prescribed cans of metracal (sp.), which was made by the same company as Boost. I hung a nail on the wall at my office and I would just pull out my shirt, hang up the bag, and keep on doing what I was doing. Don't get me wrong, I was happy to see the thing go, but as it was I lost over 20 lbs. and,not being able to swallow, I don't know how I would have survived without it. It is also quite easy to dissolve pain pills and shoot them right in the tube.

Best of luck,
Danny G.

Nicki, Sorry you and Tom have been having such problems. The tube can be a blessing and a pain in the neck all at the same time. I had mine stuck for a 24 hour period when I couldn't eat or take any meds. Finally got it unclogged with warm Pepsi. Tell Tom to hang in there with it, as it got to the point that I didn't want to give it up it was so easy to use to eat and take pills.

I used the Walmart brand of ensure. It worked OK for me and cost 70% less than the brand names. I used to jazz it up with Carnation Instant Breakfast. And when I got constipated, I used the tube for the prune juice and took extra ensure/instant breakfast and majically, I got diarrhea and no more constipation problems. Of course, it took 4 hours to get past the intestinal pains from the diarrhea, but you can't have everything.

To avoid the cuddling problem, I wore a T-shirt to bed. That kept the peg and tube out of the way and didn't interfer too much with the snuggling operation. Also, Carole, my wife, who put up with my grouchy times like a real trooper, said she ignored the tube. I'm not sure I believe her, but I never asked. You must make sure you get enough rest. If you don't, you won't be able to help Tom and you will be doing a disservice to yourself. So get enough rest to be able to keep going. You are both coming into the home stretch, so keep your strength up and you'll get through it OK.

And Nicki, please come here and whine. That's one of the main reasons we are here, to help each other get through the real tough times. And it is going to get worse before it gets better. So come here and whine/cry/whatever any time you want. We've all been there, either as patients or as caregivers. Your job is a lot harder than the patients job, believe me. Just like all mothers, motherhood being the hardest job in the world, you get all of the lousy jobs and no recognition for getting them done. So remember we all have the utmost respect for you and the job you are doing. I don't know how my wife, my caregiver, ever put up with me, but she did, and I'm sure that you will do the same for Tom. Hang in there, my prayers are with you both.