Hi Linda- great news about your distant family members Dad- good for him!

I woke up today feeling so energized- I couldn't believe it. Like, back to normal. I was pretty busy this morning doing chores but decided to slow down a bit this afternoon. I don't want to burn myself out. I know what you mean about being on the go. I'm usually all over the place! That's actually one lesson I've learned from this experience is to slow down a bit and spend more quality time with family and friends. I was spreading myself too thin before.

We'll get there in the healing process!!!!

[quote=Kristen S]Hello to the other Kristen S!

Thanks for the encouraging and supportive comments about my upcoming trip! Yes, I'm planning on keeping the PEG tube in and if I need it, it's there. If not, oh well. I've had it in since February so I'm pretty used to it by now.

Did you feel that your tube came out to early? Were you eating w/o any difficulty about 4 months post treatments? My oncologist said that most of his patients leave in their tubes for about 3-4 months post treatment. I'm okay with that!

Thanks for the warning about the sun. I've already have 1 squamous cell carcinoma and multiple basal cell carcinomas removed from various areas of my body, so I am very cautious about sun exposure. Somebody else had told me about the sun exposure and radiation. Also my arm and leg where I had grafting done. I was told that both sites should be covered up from any sun exposure for a year. When an oncology nurse told me at the beginning of this journey that I wouldn't really feel back to "normal" for a year, I didn't believe her. Now I do!!!

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I'm pretty sure I was still having some difficulty with calorie intake, but I have food issues anyway. I was back to close enough to normal for me, which is probably not where anyone ought to be. Taste was still a big problem, and spices and mint and stuff burned like crazy (still do). I was taking in enough food by mouth that I wasn't using the tube, and that was the main thing. And ... given my luck with surgeons ... I was having issues with the doctor who did my PEG (it needed replacing at one point, due to severe pain, and he wouldn't do anything! had to go to a different surgeon in the same practice, who had me in the hospital within the hour to get it fixed, sigh) ... so for me, the sooner I got it out, the safer I felt. Otherwise, no, hurrying is not something I'd recommend. And even then, it didn't heal correctly after the removal, and I couldn't get them to listen. The surgeon who did my chemo port took a look at it for me, and could immediately tell what was wrong and how to fix it, in her office, in about five minutes, and then it started healing just fine. I've been through some truly odd situations. So ... there's another weird bit of advice ... if for some reason you do end up removing it before your trip, give it time to HEAL before you travel. Otherwise, keep it till after the trip, for sure. Usually the healing is a piece of cake, but every now and then one of us gets something wonky. (Mine had a thing called granulation, which is actually not all that rare, and it was easy for me to search and find out that's what was going on, which is why it was so easy for the other surgeon to recognize and fix quickly ... but it had to be caught before it could be fixed. Not dangerous, just annoying.)

'Normal' becomes an entirely new word ... but you'll get there, and you'll find it, and it'll be good. I love your spunk, that's for sure. Attitude and willingness has a LOT to do with healing (so long as you take those breaks! LOL). I'm impressed you can do as much as you can ... I was given orders to be a couch potato while I had the tube in. And then, as I was getting to feeling better, nearly a year after I got the darn thing out ... I fell and broke my shoulder and had to be a couch potato all over again! (Can't put a cast on a shoulder, just put an arm in a sling and not move.) However, during the cancer years and the recovery years (and the broken shoulder season) I did manage to attend enough of my tae kwon do lessons to continue earning rank, and everyone cheered when I got my first stripe black belt. I *know* they passed me partly on spunk, since I was kind of fragile and they didn't go at me as hard as they would some of the other folks, but it was still earned, and it was one of the things that kept me going. Just NOT during the PEG tube season. And not when I was having to sit for six weeks with the darn shoulder.

That said, all my scout groups have me under strict orders not to break any more bones or come down with any more strange illnesses or allergies, because it always seems to happen when we have a trip planned. I am a walking Murphy's Law, I think... may your luck be better than mine! (Maybe since we have the same name, the odds balance and you get the good side of Murphy? I can hope!)

Okay- question to all of you that are so good about posting back. I REALLY do appreciate ALL of your responses!!!

My native tongue just hurts. I don't have any ulcers on top or on the side and I'm wondering if this happened to you. I'm thinking that when I'm sleeping, I may be biting my tongue. Or, have done the biting damage prior to radiation and it just hasn't healed. Anybody else experience something similar? I'm not in a high degree of pain (ibuprofen during the day and then an oxycodone before bed and sometimes in the middle of the night) but just describe it as an ache and annoyance. Can anybody relate?
When I had my PET scan done prior to rads, RO said that he didn't see any new cancer on my native tongue. When I had a CT scan done about Week 5 of rads, again RO said that my native tongue looks good. Of course, I was SUPER worried about another lesion but he said no. Whew....that was a relief!

Week 3 post rads is today!!! Feeling pretty good for 2 days in a row now. Getting out of the house, driving around and have more energy. I'm definitely spreading my day out though as I don't want to hit the wall and crash!

Hello Kristen S!!

I've had some issues w/ my PEG tube as well but it seems to be doing okay for the moment. And since it's doing okay, I'm making sure that I really take care of it. Around Week 5 or 6 of radiation, it started to hurt under the skin. I couldn't even sit up straight w/o it aching. The surgeon that put it in at my hemiglossectomy appointment is about 45-50 mins away from my home. I did go down and have the nurses look at it and they were clueless!! They thought that maybe it was infected and I should be on antibiotics. Or maybe they should change it out for another one. But at that time, I hadn't even finished rads and didn't want anymore treatment. I ended up seeing a GI specialist at the hospital where I did my radiation treatments (about 30 mins away from home) and he said it was fine. He ended trimming the length of my tube. For some odd reason, the discomfort went away on its own. I too have had the granulation issue. The surgeon that did the hemiglossectomy uses a silver nitrate gel. His nurse just rubbed it around the entry and the tissue sloughed off. My granulation came back again but then disappeared. It's starting to come back a third time but I'm just keeping an eye on it. I'm telling myself that my tummy wants the PEG tube out of there!! Apparently the granulation is a sign of healing.
I never had anybody tell me to be a couch potato w/ the PEG. Holy moly! I've been doing housework, gardening, yoga (simple stretches!), walking, laundry, etc.

Sorry to hear about your shoulder surgery! As my Mom would say, "if it's not snakes, it's alligators!"

First stripe black belt??!!! Awesome!!!

To elaborate more on KristenS's granulation comments.... Granulation is something almost every feeding tube user will go thru from time to time. It can be very, VERY painful and uncomfortable. The granulation is a sign the patient is overdoing it. When someone has a feeding tube all kinds of things can affect it and its placement. Complications can arise if the patients is not careful while they have a tube. Feeding tube users do not usually have to stay put on the couch unless they have other issues going on. Things not to do with a feeding tube.... lift anything over about 25 pounds, strenuous exercises, swimming, soaking in a hot tub or bathtub, scuba diving, any activity that requires heavy use of abdominal muscles like rock climbing or gymnastics. Regular housework is ok, same with gardening, walking, laundry, etc. Just be careful not to carry heavy laundry baskets or lean the baskets against your stomach. For further feeding tube advice, you can talk this subject over with your gastro doc.

Feeding tube users should use a drain sponge (a 4"x4" gauze bad that has a cut on one side) at the tube site between their skin and the plunger disc. If the patient has granulation ask their doc for a prescription for silver sulfadine cream. Use a q-tip and place a very thin layer of silver sulfadine cream around the feeding tube site then cover with a drain sponge. The silver sulfadine cream should very thin where you can slightly see thru it, do not rub it in, allow it to soak in. Change the drain sponge daily after showering.

Hope this helps!

Just to add to Christine’s info about granulation, when cleaning the insertion site, don’t ever rub it, just dab at it to clean it. My husband had granulation twice over the course of two and a half years, each time the silver sulfadine did its work.

[quote=ChristineB]To elaborate more on KristenS's granulation comments.... Granulation is something almost every feeding tube user will go thru from time to time. It can be very, VERY painful and uncomfortable. The granulation is a sign the patient is overdoing it. When someone has a feeding tube all kinds of things can affect it and its placement. Complications can arise if the patients is not careful while they have a tube. Feeding tube users do not usually have to stay put on the couch unless they have other issues going on. Things not to do with a feeding tube.... lift anything over about 25 pounds, strenuous exercises, swimming, soaking in a hot tub or bathtub, scuba diving, any activity that requires heavy use of abdominal muscles like rock climbing or gymnastics. Regular housework is ok, same with gardening, walking, laundry, etc. Just be careful not to carry heavy laundry baskets or lean the baskets against your stomach. For further feeding tube advice, you can talk this subject over with your gastro doc.

Feeding tube users should use a drain sponge (a 4"x4" gauze bad that has a cut on one side) at the tube site between their skin and the plunger disc. If the patient has granulation ask their doc for a prescription for silver sulfadine cream. Use a q-tip and place a very thin layer of silver sulfadine cream around the feeding tube site then cover with a drain sponge. The silver sulfadine cream should very thin where you can slightly see thru it, do not rub it in, allow it to soak in. Change the drain sponge daily after showering.

Hope this helps![/quote]

This DOES help. Oddly, though, I wasn't doing anything at all. I was doing precisely what I was told, being a couch potato. (I was told to do that so I wouldn't jar the PEG loose. Maybe they were being too cautious in their advice.) I was doing sponge baths and very little housework and ... well ... going out of my mind with inactivity. And my gastro doc turned out to be one of my 'idiots' on my list now, so that probably explains a lot. He didn't care that he was sending me home in truly excruciating pain. (The replacement done by the other doctor was a piece of cake, only kept me in the hospital overnight just in case there was a complication.) Anyway, when it was finally removed, I noticed the granulation start ... hadn't seen anything like it till that point, but Google was my friend on that one to at least identify the issue. And then, one quick treatment in the chemo port surgeon's office, and she made a follow-up for the next week for just in case ... but by then it was well on its way to healing. I guess I got lucky that it didn't cause pain... I did NOT know about that. Thank you, Christine, for letting me know that there's one bullet I did dodge in this whole crazy list of doctor screw-ups I'm accruing! (At least it gives me anecdotes to share if someone needs them, LOL.)

Of course, now you've mentioned pain, I wonder if there was some unnoticed granulation or something that caused my issue in the first place where it needed replaced. The second doc thought it had gotten misaligned and that's why he thought just resetting the whole thing would be best, but who knows? I was in too much pain to know, but I didn't SEE anything obviously wrong. Hm. Probably a different kind of pain altogether.

Well, I've learned something new today ... can I go back to bed now?

Thanks for the reminder- will do!!

KristenS... Yes, a feeding tube can definitely become dislodged. But it takes some doing, it wouldnt happen from washing dishes or vacuuming. I have had this happen while I was hospitalized for something else. I also remember maybe 2 or 3 others over the years going thru theirs being dislodged. My tube was placed a while ago so it was pretty well set and should NOT have an issue when I was laying in a hospital bed doing absolutely nothing but sleeping. Anyway, one day I had a brand new doc overseeing my care. She proceeded to press firmly around on my abdomen. I was half asleep so didnt realize what was going right away. I immediately told her "be careful, I have a feeding tube" and she stopped her abdomen exam. Well, just my luck... she had already pushed way too hard on the wrong spot and my feeding tube became dislodged and settled itself as embedded in my abdominal wall. You would definitely know if this happened to you. That was some of the very worst excruciating pain Ive ever gone thru.. especially when the student nurse was trying to force feed me thru the tube. Nothing would go in and everytime she pushed with all her might I screamed in agony due to it feeling like I was being stabbed by a knife. That one succeeded in creating a medical emergency where after telling every single medical professional who walked into my room for the next 3 days that I had something very seriously wrong. Not one person took my complaints seriously until I told the one attending doc .... " I wasnt just an average, uninformed patient, I had been part of the OCF forum for years and understood feeding tubes better than he did. I insist on getting a CT, Xray or MRI immediately or I will begin seeking legal representation for neglect." Well the test came back and showed the issues which could have turned into a life threatening problem if left another day or 2. I had surgery to remove the embedded tube and replace it with a different kind of feeding tube (J-G tube). For several weeks I had a special bag attached to the one port of my tube to drain any fluids from inside my abdomen. NOT fun at all!!!!! Of course thats just how things go for me, just remember everybody's different.. very, very few other patients will ever experience anything like that.

[quote=ChristineB]KristenS... Yes, a feeding tube can definitely become dislodged. But it takes some doing, it wouldnt happen from washing dishes or vacuuming. I have had this happen while I was hospitalized for something else. I also remember maybe 2 or 3 others over the years going thru theirs being dislodged. My tube was placed a while ago so it was pretty well set and should NOT have an issue when I was laying in a hospital bed doing absolutely nothing but sleeping. Anyway, one day I had a brand new doc overseeing my care. She proceeded to press firmly around on my abdomen. I was half asleep so didnt realize what was going right away. I immediately told her "be careful, I have a feeding tube" and she stopped her abdomen exam. Well, just my luck... she had already pushed way too hard on the wrong spot and my feeding tube became dislodged and settled itself as embedded in my abdominal wall. You would definitely know if this happened to you. That was some of the very worst excruciating pain Ive ever gone thru.. especially when the student nurse was trying to force feed me thru the tube. Nothing would go in and everytime she pushed with all her might I screamed in agony due to it feeling like I was being stabbed by a knife. That one succeeded in creating a medical emergency where after telling every single medical professional who walked into my room for the next 3 days that I had something very seriously wrong. Not one person took my complaints seriously until I told the one attending doc .... " I wasnt just an average, uninformed patient, I had been part of the OCF forum for years and understood feeding tubes better than he did. I insist on getting a CT, Xray or MRI immediately or I will begin seeking legal representation for neglect." Well the test came back and showed the issues which could have turned into a life threatening problem if left another day or 2. I had surgery to remove the embedded tube and replace it with a different kind of feeding tube (J-G tube). For several weeks I had a special bag attached to the one port of my tube to drain any fluids from inside my abdomen. NOT fun at all!!!!! Of course thats just how things go for me, just remember everybody's different.. very, very few other patients will ever experience anything like that. [/quote]

Oh my gosh! That's terrifying!

I may never know what happened, or what was really wrong. There's an x-ray or something on file someplace, but I sure don't recall what it showed. i just know that the replacement made it better, and the pain was unbelievably bad. (And this from the person who didn't go to the ER with the broken shoulder because I didn't want to wait forever... waited till the next day to see a proper specialist. Of course, I also thought I'd merely dislocated it, sigh.) I do NOT tolerate pain well, but I can do stoic if I must and I know when not to do stoic ... the tube was beyond acceptable and into "Kill me now, please."

But it sure sounds like I was misinformed from the beginning about acceptable activity levels. That's a pity, because being more active in the early weeks would have helped keep my spirits up.