kim951's Cancer Blog
July 2, 2009
Ok well, I’ve been plugging away with my seemingly never-ending pre-treatment to-do list. There was one thing on the list that made me more nervous than the thought of getting my upcoming chemo—getting my PEG tube or feeding tube. Eeep!
My first reaction to the idea of the feeding tube was….”you’re going to put a what, where?” The what = the PEG (percutaneous endoscopic gastrostomy) tube, the where entailed poking a hole through my stomach wall, anchoring the tubing and running the tubing to the outside of my abdomen. Being the squeamish gal that I am….this was a difficult idea to embrace. I’ve been told that once it becomes too difficult for me to eat via mouth (radiation therapy for tonsil cancer will leave your mouth very dry, raw and sore), this tube will be a good thing as then I can feed myself using a syringe and liquid food.
My second reaction to this was the same as it has always been in regard to any invasive and potentially painful medical procedure….”uummm is it going to hurt?”, followed by “will I be knocked out doing the procedure?” My very kind and reassuring gastro doc said the pain can be relieved through Tylenol and yes, I’ll be in twilight sleep so I won’t feel anything.
Ok, as tough as this feeding tube idea seemed to me, I kept saying to myself, “I’ll do whatever it takes to get better.” I’m placing trust and faith in my doctors and the medical community and plodding forward.
The day of PEG placement, I arrive at the procedure facility and three very nice nurses get me ready and prep’d and I’m wheeled off to the operating room. I’m extremely nervous and I’m letting everyone know it. :) The nurses reassure me that I’ll do fine.
They put me under anesthesia and I don’t remember anything except stirring a bit during the procedure and someone saying “you’re doing great Kim, it’s almost over.” At this point, they must have given me more sedation as I don’t remember anything after that but waking up post-surgery in my little curtained hospital room.
I went to slowly get off the bed and get dressed and every step I took was excruciatingly painful. I barely opened the curtain and saw a nurse…she could tell by the look on my face that something was wrong and ran for the doctor. He adjusted the device in my abdomen on the spot….he said it was too tight. I was in so much pain he sent me home with a prescription for Vicodin which I was grateful to have as it helped alot with the pain the first few days.
That evening after the PEG surgery, my friend Patty took me back to her house so I could rest. I enjoyed a very yummy ice cream sandwich bar – you know the kind with the choco cookie on the outside and vanilla ice cream on the inside. Num num num! I was starving and it tasted really good.
So I stay overnight at Patty’s, then morning rolls around and I go to flush the PEG tube with water (which I was instructed to do 2x per day). I notice some brownish gunk floating down my feeding tube (from my stomach). Oh my! I was pretty freaked out before I realized that if food can go into the feeding tube, food can also roll out of the feeding tube from your stomach….eeeep! Sooo, I was basically looking at the prior night’s churned up ice cream bar. There are so many little things about the cancer journey that just take you by surprise. :)
Here is what I learned from the ice cream bar experience…
-Stay on top of the tube flushing (I fell asleep and didn’t flush the night before).
-Gravity is not your friend. So tape the PEG running up your chest/abdomen, pointing it towards your head. I was initially letting it “hang” and point towards the floor.
-Clamp the tubing clip closer to your body so that food from your stomach doesn’t make it’s way all the way down the tubing.
Washing the tube has been another adventure. Since I’m a bit squeamish, the first couple of days I would try and wash it in the shower, and I would almost pass out. So I would have to exit the shower mid-wash, lay on the couch, let the fan hit me with some cool air, then return to the shower (with cooler water) and try again. As with any new challenging experience, it’s all about the baby steps. I have decided that I will master the PEG tube….so there is no giving up here!
I’m very happy to say that as of 7/3, I’m one week post-PEG and I can now wash it without feeling like I’m going to take a nose dive in the shower. My friend, Eric, also suggested that I put a patio chair in my shower (or a shower stool), so that if I feel like I’m going to pass out, then I can sit down. I thought that was a really good idea!
A few words on post-PEG walking and activity….for a few days, walking around was pretty painful since you have to use your abdomen a bit more than you might think. Even getting up off the couch was a chore….I had to roll myself off and kind of fall on the floor. So here are my newly learned getting around post PEG tips (for the first few days after the placement)....
-Have someone else walk the dogs :)
-Have someone else take out the trash :)
-If someone can help you off the couch by lifting your arms up and gently pulling you up it’s helpful (you don’t have to use your abs as much). Rolling off the couch is good too, however, someone helping you is better.
-Try not to drive as much (or at all) for the first couple of days
-Make sure to have some laundry done – you won’t feel like doing any for a few days post surgery
-Definitely no heavy lifting!
Ok, well I now consider myself getting closer to PEG mastery. It’s healing well, I’m flushing it twice a day, I’m cleaning it, and keeping it taped up nicely. Life is good!
I hope everyone is doing well and having a nice evening. My good thoughts and lots of hugs for each of you as we fight this disease, embrace life, and walk the road to survival.
08.04.09 
Thanks for your support - 
wow you are a brave young lady! isn’t it amazing what we have to endure and wonder how we do it? I guess when something has to be done we can find that inner strength and courage to do it. Congrats on mastering that thing and I wish you the best, with lots of hugs and prayers,
Amy
Kim,
Your post not only brought back memories but brought tears to my eyes. I’ve read all of your posts and you’ve become stronger with each one. Although there’ll be some really rough days, you’re going to finish strong.
I remember my PEG. I was luckier than most here today. They inserted mine during my 14 hour surgery, however when I woke up in ICU, the first thing I did was start throwing up, it wouldn’t stop. In the first half hour in ICU they changed my sheets and gown twice. I don’t recall if it was from the PEG or the amount of time the had me under.
I also taped the PEG to my chest, mine had a plug on the end so I could cap it. But if I dropped it (slipped out of my hand) it would run out just like you described. Since my jaw was wired, I had to grind up all my medicines and use the PEG to administer them. This was the way I ate and took medicines for 6 months. But as you described, you get use to and when they finally take it out, you won’t miss it.
It’s great to see all the support you’re receiving from everyone, especially Anna. I remember when she started, she was also afraid of all the unknowns. Now she’s a strong survivor and I enjoy reading her comments on your post. Anna and Dennis have the latest and most reliable information. A lot has changed since I fought cancer, all for the better. During my first round of radiation I wasn’t given any meds to take.
Good luck, continue to be strong and before you know it you’ll be through with all this and helping others…......
Happy 4th of July
Many hugs and thoughts…....
Ron
Hi Kim,
Yes, that feeding tube is kind of creepy at first. Its like some alien being attached to your stomach. (and you have to feed it) It takes your body about a week to adjust and then its just a normal part of life. You WILL be glad you have it later. I remember how nervous I was doing the first flush. My husband had to hold me up. Being where I am now, having to eat with a sore mouth and throat, I just want to say make sure you are fully healed and eating normal before you have it taken out. This is miserable trying to eat this way.
All my best wishes
Anna
Hey Kim:
What a wonderful post! This is what it’s all about——sharing our own experiences to help the person who is just a few steps behind. I didn’t have the same type of cancer so I can’t relate to what all you “tonsil/throat/esophagus” patients are going through, but my heart goes out to you. You are strong and positive and an asset for our family here.
Keep up the fight and stay in touch.
Kim, reading your PEG post brought it all back… I was in so much pain after my PEG placement that they kept in the hospital for three days beyond the surgery day. And then learning how to clean it where it goes into your tummy. And then getting where I could tolerate putting food in it – which I had to do immediately because I’d delayed putting in the tube until I hadn’t been able to eat at all for two or three days – without pain or nausea. And the constant flushing it and getting used to seeing whatever I’d last eaten backing up in the tube (for months it was just yellow stuff out of a can but when I started eating, it was whatever real food I’d eaten). Funny/irritating thing started happening months down the road after I’d had the tube for some time and the cap was getting worn out: it would open randomly and dump its contents into my clothes and all over me (I’d keep the tube tucked into my underpants when I was out and about). One day I was at the Farmers Market and decided to see if I could eat/taste a snap pea. I took a few bites of the pea and literally minutes later the cap of my tube popped and as I looked at the mess, it was full of green bits of peas. That was when I knew I needed to get the cap replaced right away, because I wasn’t yet ready for the tube to come out. It’s been in since early November ‘08 and I finally had a clear scan, so hopefully it’s going to come out in the next week or two… You’re doing a great job of looking at the bright side of things and confronting some really tough stuff. One day after another—- you’re going to get through this and suddenly you’ll be on your last day and then you’ll be healing.
Wow Kim! I am so proud of you! That is a lot to endure & you are fairing through like a real champ.
Great big hug heading your way,
Monica
Kim,
You are certainly a brave soul. My father had ALS/Lou Gehrig’s and he had the same feeding tube you speak of. Reading your post brought back so many memories!
You go girl. You give this cancer crap a run for it’s money…you can do it!
Good luck and take care,
Kim
Hi Kim – just read your message from last summer. I had tongue base SCC, did CCRT last Feb. and March, 2009. I had a nose tube for 6 months and now a PEG tube for the last 6. Also just found out the radiation I had destroyed my epiglottis and other swallowing apparatus – they say I’ll never be able to swallow normally again. Just wonder how you’re doing and if you’re still on the tube.
Hi Joe,
Nice to “cyber-meet” ya. :) Wish it were under different circumstances though. None of us ever signed up to join the “Big C” club.
My PEG was pulled (literally…lol) about 4 to 6 weeks post radiation and chemo. At that point, I could take in enough liquid nutrition where I no longer needed the PEG. I can eat almost anything I want at this point although some foods are uncomfortable so I avoid them due to my very dry mouth (like bread, crackers, etc).
I’m truly sorry to hear that your PEG might be a longer term situation. I totally understand how uncomfortable it is having plastic tubing hanging out of your body…there is nothing fun about this at all. On a positive note, thank goodness we do have them as many of us would not be able to get the nutrition we need to survive. I’m pulling for you Joe and pray you see a day without the PEG. Please don’t give up on the idea that you will eventually gain some swallowing function back. Miraculous things can happen with the human body that no one (not even our docs) expect. :)
I can also tell you that I’ve heard (informally) that cancer at the base of the tongue patients sometimes have greater challenges with swallowing function than tonsil cancer patients (post-treatment). I was told that for the most part my swallowing function would remain intact post-treatment, however, I can tell that it has changed because I really have to think about swallowing now and actually tell myself I need to swallow. Whereas before treatment this was an automatic function I never would have noticed. My ENT did mention perhaps taking a swallow test in the future, however we didn’t schedule anything so it’s probably not that urgent in my case.
I hope this information is helpful. Feel free to drop me another line if you have more questions. Stay strong! Wishing much good health!