Newbie here..some ??s

[ohec2002]

A little background (I'll *try* to be brief, but I'm not known for it! lol)...

My dad (61 2 days ago) has had abdominal pain off and on for around 12yrs. About 10yrs ago we managed to convince him to go to the dr. Dr wanted to run some tests, but as Dad had no health coverage, he told them not to schedule anything, he'd have to scrape the $$ together first. (They wouldn't do the tests otherwise) My parents just didn't have the $$, period. Mom told him to go ahead and schedule them, we'd figure something out, but he didn't. A couple of years later my hubby had a heart attack and as a result finally went through the process of getting into the VA system. Mom convinced Dad it was a good time to get HIS VA going too (so he could go get those tests!), so they went to do the initial paperwork together. My hubby then followed up with getting his card and going to his "initial appointment" to finalize the whole thing....Dad did not. He has GOT to be the world's foremost procrastinator!!

The pain never cleared up. It'd go away for awhile, come back for awhile. Over the summer this year it came back for a long enough stretch that Dad started losing a little weight. Around 3wks ago we finally convinced him to try going to the dr again...only through VA this time (since he was in the computer). He said he'd never gotten his card so we told him to do that now. He did (amazement #1!), but the card still hasn't actually arrived. It's in the mail. He had to do some more paperwork and set up an "initial appointment".

He made a phone call to the VA Mon. am. and Mon. NIGHT I finally pry out of him that yes he has an appt. now...for Oct 17th. I wasn't happy, and of course neither was Mom. After MUCH, MUCH talk, we finally got him to agree that a month was too long and it was thoroughly pointless to wait even until morning. Just go to the ER. He actually went (amazement #2).

He went in at 11:30pm and by 8am was out of surgery. They said going in that it was prob. appendicitis (in hindsight, Mom and I think they knew better but didn't want to freak Dad out...which was a perfect way to handle Dad), but once they came out they said cancer. The dr removed half his colon and his appendix, along with a tennis ball sized mass that was pressing on the appendix. Also removed 15 nodes. He said the liver looked good and he thought he'd gotten all the cancer.

Dad had had a chest xray done in the ER and that apparently was clear as well. They'd originally said it would be 2wks before we had any test results but they came back this morning. =) Only 1 of the nodes had any cancer in it. The dr seemed not only pleased, but surprised. The talk is that he will do chemo, but that is *all* we've heard about that so far.

We've not even seen an oncologist yet. I'm guessing they want him to recover from surgery first (?). He was looking about a million times better than I'd seen him in years last night, then had a rough night because of the pain and the fact that a nurse was seen at shift change (7pm) and then not again until the next shift change (at 5am). They'd worked for 2 days to get his pain controlled so his blood pressure would come down and stay there, and then this set-back. Mom was NOT pleased. She talked to the dr this evening, as we were leaving to come home for a couple of hours. When we got back, the shifts had changed and the night nurse almost immediately came in to check on Dad. Dad also said that the day nurse had come in with a pain med 'boost' just after we left. We think the dr had a few words for the nurses. lol

Anyway, the way I understand things thus far is that all this means his cancer is at stage III-A. That it had spread to *a* lymph node, but no further (or at least not obviously so, I do understand about teensy cancer cells floating around in the blood). I also understand (from my own research) that prob. the chemo will be around 6mo and include 5FU and LU, and that they are typically easier on the side effects. ALL week everything we've heard has been GOOD news, we think. =)

I do have some specific questions, though, and was hoping you all could help...

colon resection recovery - What do we need to know?

He's been cleared for liquids, ng tube and catheter are out. They keep bringing him tomato and orange juice though. I can't imagine such acidic juices would be the first choice??? He's not feeling 'up to' taking much more than a bite or two a meal, but I think that's more because of unappetizing (very!) choices and tummy rumblings than nausea or outright pain.

1) What kinds of things should we offer him that would be gentle on his tummy, but still maybe entice him to try and eat more?

2) What can *we* do to help him recover while in the hospital? Any tips and/or tricks?

3) In general...how long before we start setting up chemo? (Trying to figure out how much time I have to study up...lol)

4) Any tips, suggestions, etc for when he comes home? I don't figure he'll be released till at least Tues or Wed, but if I can prepare now (special food shopping maybe?), I'd like to.

colon cancer in general....

1) What does a 'tumor indicator level of 15' actually MEAN? The dr told us this morning his indicator level was 15... before the test results on the nodes came back, so we're presuming this level was pre-surgery...taken during the ER visit or surgery itself?? I understand that this particular cancer has markers that distinguish themselves from other cells. That much I get. But what does the 15 mean? Would that be our 'baseline', and then they run another check in a couple of days to see how much the surgery itself lowered it or what?

2) Can a chest xray and a visual inspection of the liver (during surgery) tell with *any* kind of certainity whether the cancer had spread past the lymph nodes? Or is it just presumptive? Are there other tests that need/will be done to determine for sure?

I figure we'll have chemo ?s later, but for now I'm thinking that the big issue is the recovery from surgery. Chemo after that.

I know my post ended up being WAY too long (as always) and so thank you very much for reading this far! Any help, ideas, etc would be so appreciated! I've dealt with medical issues before (lots), but never cancer nor major surgery, so this is a whole new ballgame for me, and I hadn't been practicing my pitching lately. LOL

Thanks again,
Chris

[Jeni61]

Chris, I am new too so my info will not be as good as some of the others.

I think visual inspection of the liver is very good, as, rarely, sometimes scans miss things, but they will also likely to ct scan and petscan too.

There isn't any test for the teensy microscopic cells - hence the uncertainty all of us will live with, all of our lives. Boy oh boy do I wish that were different, and maybe someday, it will be.

I haven't been thru surgery yet, but the folks on this board have great ideas for comfort and things to watch for.

I do not know what "tumor level 15" means - anyone else know ??

Jeni

[Nassau one]

I am so sorry to hear about your dad and will try to answer at least some of your questions. We have some really knowledgeable, wonderful people on this board who will have more clinical information for you, I am sure.

Firstly, what a lucky man your father is to have a loving and caring daughter who just wants the best for her dad! That will go a long way in helping his recovery and will help to support your mother.

Secondly, to encourage you, my husband was 65 when he was dx with Stage 111C rectal cancer three years ago. He received 8 months of chemo (had to be spread out over a slightly longer period because of complications starting at the first surgery) and 6 weeks of radiotherapy. He is doing well today. He had 5Fu and leukovorin but had he been in the US I think he would have had Folfox or one of the other cocktails! Today, apart from some lingering side effects, he is the same man he was three years ago. Yes, life changes and there are changes in him, but if you look at him you would never know what he went through. He is precious! Hope that gives you lots of hope!!

If I ignore any of your questions, it is because I do not know! However, when it comes to diet after surgery (and your dad seems to been doing very well in recovery from his surgery) they usually introduce foods very slowly and carefully to allow the digestive system to recuperate. I would ask the doctor about foods to give him, but it will be initially liquids and then soft foods. My husband had, as I said, complications, and yet by the time he was discharged, ate simliar meals, initially in smaller quantities, as he did before surgery. Again, everyone is different and it depends on how he tolerates food and how his bowels are working. If your dad only feels like a few bites at a time, don't worry too much. These things cannot and should not be hurried and his surgery is still quite recent.

They will only release him when his bowels are functioning properly and when he can tolerate at least soft, solid food.

I am sure they are encouraging him to walk as much as possible. This helps the system too. When he comes home, he will need to rest but he also needs to walk around as often as he can.

They considered my husband high risk and would have started chemo about two weeks after surgery had his condition permitted. However, in spite of the fact that he was in hospital for nearly three weeks, he still started chemo just over 4 weeks after surgery. I was so scared! But he tolerated it pretty well. From what you say about your dad, he will be in a much better condition when he starts his treatment.

As to whether they can tell if the cancer has spread to any other organs, after surgery, my husband was told it had not, but that it was in 11 out of 18 lymph nodes. We do not have a pet scanner here but the ctscan probably helped with that diagnosis too.

Do come back with more questions. One thing I do know, when chemo starts, your dad must drink lots of water. It is amazing how quickly you can become dehydrated while on chemo and drinking water really helps to feel better. But we are not there with your dad yet! I just wanted to put that reminder in for future reference.

I hope you are encouraged. We have an amazing number of survivors here who will inspire you and support you through this. Some of us are caregivers like yourself so we understand your concern and anxiety. It is not an easy road but try to see a few months down the road and your dad will be in full recovery.

Love and prayers,

[jaydees]

You might try soups as a meal. This will give him both nutrition and water.

The worst pain I recall was the gas pains I had while my bowels started working again. I would feel a large bubble working its way down and then,,,,, relief,,,, as it exited. Was enough pain to make me sweat.

If he can get up and walk the length of the hospital corridor once or twice a day that will help get things moving.

He should try and get more liquids than he used to as his colon will not be reabsorbing water as much now. Juices and sports drinks are best. Stay away from carbonated drinks for a little while, he doesn't need the gas.

He should try eating what he used to eat only in small portions for the first 10 days. As for anyone try to avoid the junk foods like potato chips.

He will not be fully healed from surgery for months, possibly even a year, but should have regained a lot of strength by two months post-op. One drawback is that his was emergency surgery and this is always harder on the system than a planned surgery. Watch for fevers, if he develops one get to emergency ASAP and impress upon them that he is recently post-op. If he passes blood from either end of the digestive tract----Emergency ASAP.

I had my surgery on May 10, 2001 and was in chemo before the end of June. Chemo is hard on dehydration and electrolyte loss. Extreme loss of strength and stamina is a sign of dehydration. Sports drinks and juices help ward this off. Diarreha is one problem, avoid huge meals and eat slowly. Really spicy foods should be in moderation.

[ohec2002]

Thanks for all the advice, guys! I think my Dad is very lucky, but not because of his kids...because of the way all this is turning out! I know it could have been SO much worse. He didn't even have to worry about the surgery for long. Amazing! =)

I did sorta figure out more about the tumor indicator. It seems that was his CEA level, though when it was taken I do not know. I've read in a few places that normal (i.e. no cancer) is typically < 3 or < 5 if you smoke. Dad does smoke, so I guess the part of the 15 to 'worry' about is 10? I've also read that those with CEA < 15 have pretty good survival prognosis, so until we hear/see otherwise, I'm definently going to look at this as something we can whoop. =)

Foods was my big concern the other day. The hospital has been bringing him the *same* foods every meal...cream chicken soup, tomato juice, orange juice, and jello. He did get mashed potatoes once. He's not the least bit interested in any of it. The juices just seem too acidic, and apparently the rest leave a lot to be desired in the taste department. lol We took him a vanilla shake yesterday and he did manage to sip a little. I'm going to take him some Ensure (they're not dripping nutrients anymore and he's NOT eating enough to get what he needs...no way), and some cream of mushroom soup (which he *does* like) today. I'll probably take some strained chicken noodle, too. He might not like that as much, but chicken noodle is a standard around here when people are sick. LOL

I do have another question, though. I don't have a whole lot of experience with hospital stays/nurses. My question is... does a nurse have a right to give a patient a med IN PLACE of what he asked for?

The dr ordered that Dad could have a pain med boost 2x an hour if he asked for it. He asked and the nurse brought him Zestril which turns out is his hypotension med. He asked again a bit later and she brought him Ativan, which turns out is a strong anti-anxiety med used to help sedate patients pre-op and keep them from remembering the events of the day of surgery. Neither was his pain med, which he'd asked for. The Ativan was only prescribed (by a secondary dr) because this nurse said he was "anxious" about walking, because he wouldn't get up and walk right when she said. He was NOT anxious, though. He'd had a rough night and had little sleep(about an hour or so when she asked at 7am), so had told her he wanted to nap first and THEN go walk. The dr had even told Dad directly that he did not HAVE to walk if he didn't feel up to it.

Mom wasn't happy, naturally. I think she's planning, now, to get a complete list of all his meds so that he can ask for the pain stuff by NAME when he needs it.

Thanks again everyone for all your info and advice! =) With ya'lls help I'm sure we'll whoop this bugger! =)

Chris