One patient with glioblastoma still alive nine years later
by MissViolet on Sun Jan 11, 2009 12:00 AM
Hey there everyone out there in the crappy world of Cancer Land.
I am a 24 year old, four time cancer defeater.
I had Osteosarcoma at age 11, complete with chemo and an above the knee amputation. At age 21, the cancer returned in my right lung and I had a full pneumectomy (lung removal), plus some hard core chemo. In the summer of 2008, at age 24, a small, pea sized tumor was found in my left lung. I had Cyberknife radiation/surgery and two weeks after that, we discovered that I had a baseball sized tumor in my duodenum and some of my stomach. I had a Whipple Procedure done in August of 2008, with excellent results. Half of my pancreas, a third of my stomach, all of my duodenum and a piece of my intestine was removed.
The reason that I decided to write this was because I didn't really find many promising post-Whipple reports. It is possible to have the surgery and have things go very well.
I woke up very drugged the day after the surgery, with a tube down my throat, which I was NOT very happy about. After the removed it, my throat was very sore and I was able to talk a little bit, but I was till very sedated. I had a bladder catheter, two drainage tubes with collection bulbs in my lower right belly area (to collect random the fluid that would congregate in the area), A G-Tube coming out of my upper left stomach area (to drain the excess stomach acid that had built up), a bandaged incision area and three I.V.s in my arms, plus the heart monitor cables and the blood oxygen finger monitor. They kept me very pain free and comfortable. I was in the I.C.U. for three or four (I can’t really remember much) days, where one family member was allowed to stay the night with me. I was then moved to the regular adult, post-surgery floor. I was not able to take anything by mouth, even though my mouth was horrendously dry. I did prove to the nurses that I was able to swish waster in my mouth and spit it back out without swallowing, so I permitted to do this. My lips got very dry and sore, so having a tube of chap stick on my side table was a must. I did get sick often, usually vomiting gross green bile. It hurt a little the first time, with just having part of my stomach removed, but after a while I got used to it. It was boring in the hospital and the days were long, but I had my family there to keep me company. After the drainage tubes (with the bulbs) ceased filling with fluid, my surgeon removed them. This really didn’t hurt at all, it just felt like I had “butterflies in my stomach”, even though the tubes were not in my actual stomach. The day that they took me off of the P.C.A. pump (patient-controlled analgesia) was a tough one. It was the machine that I used to administer myself morphine when I felt that I needed it. They then put me on a schedule of nurse administered morphine and I’m thinking that it was every four hours, even though I’m not 100% sure. I was not in pain though. Three days before being released, my surgeon felt that I was doing well enough to try a liquid diet. The first day, also the day that they took me off of the P.C.A. pump, ended in my vomiting all of the liquid up, but I think it had more to do with me withdrawing from the drug than the actual liquids. The next day I was not allowed to have anything by mouth. I was also given a laxative and told that I had to have a bowel movement before I could be release. I did eventually have one, even thought it was very hard from sitting in my body for the few weeks that I couldn’t eat prior to the surgery. The next day I was allowed to have liquids again and it was successful. My surgeon deemed me well enough to go home the next day. :]
Once I was released and sent home I was able to have small amounts of liquids the first day. My stomach and the incision site were both very sore, due to the fact that I couldn't keep the pain pills down. I kind of rode out the pain... it wasn't too bad and it was very bearable after the first two days of being home and getting the morphine out of my system. [I was sent home with the drainage tube (G-tube) still in me, which bothered me, but it also really helped. If I ever felt like I was going to vomit (and you will, for sure), I would grab a zip-lock baggie, seal it around the tube, open the stopper and let my stomach drain. It was gross, especially for a vomit hater like me, but it really did help.] Soft solid foods came the next day and in very small amounts. I'm talking no more than half a “dixie cup” of anything.
My body was used to being hydrated intravenously, so it was hard to keep my hydration levels up by mouth. I really did well with Minute Maid brand fruit punch and ice, “dixie” sized. I couldn’t bare the taste of water AT ALL. I had small amounts of very watered down lemonade with crushed ice. I was able to tolerate dairy, something that I’ve read that most people can’t. I say, don’t knock it ‘till you try it, right? Soft foods that sat well with me included bland mashed potatoes (no skins), Stove Top stuffing (with half the butter), nasty, nasty Ensure, small amounts of jell-o, bits of white bread, cream of wheat and ice cream. All of this was served in plastic Dixie cups. Honestly, it was VERY comforting to have something to eat out that was small… it helped me psychologically feel accomplished in eating all of the food, even if it was only a few tablespoons. You could also try eggs, something that was recommended, but I couldn’t bring myself to eat for some reason. Things that did not set well with me included: fettuccini (got to love a girl for trying, right?), slurpies, all fruits (instant potty time) and anything too rich or that contained MSG. NO carbonated beverages until you doctor says so! I got VERY tired after eating anything at first, so I just laid down (with my head elevated) and let my body do its thing. I was hungry almost all the time, mostly because my stomach could only hold small amounts of food, thus digesting faster and starting the cycle over again. I would wake up in the middle of the night STARVING and found that a few swallows of that horrid Ensure was tolerable and held me over until breakfast. I kept an ice-pack filled cooler next to my bed with a bottle of the Ensure in it for my Midnight “feeding”. This was about the first week after I came home or three weeks total after the surgery. You will be instructed to not lift anything that weighs more than a gallon of milk, due to the fact that your stomach muscles were just cut open. Listen to the doctors!
After that first week, I was instructed to eat “my normal diet” by my surgeon. Um… yeah. Don’t do that. Take it slow. I enjoyed plain lunch-meat turkey on white bread with the TINIEST bit of mayo – just half a sandwich. Don’t push it. If you’re feeling even a bit full, listen to your body and stop eating. I swear the sandwich will be there in ten minutes. :] Do not go overboard with fats either. My body wasn’t able to digest them and they would come back up. SO not worth the 60 seconds of good taste. :] I continued to experiment with little bits of “regular” food. I was able to tolerate a piece of vegetarian pizza (Trader Joes), hummus, more mashed potatoes, mac-n-cheese (light butter), cinnamon sugar toast (this was my survival food!), Rice Crispies with milk (I didn’t drink the milk, though), the insides of half a veggie burrito and basically anything that was not too hard to digest. My body did not tolerate beef (and still doesn’t), Pedialyte anything, large amounts of fruit, and anything greasy. Poultry made me feel good, but also took a large amount of energy to digest -don’t over do it! I was tired all the time and it was ok – you will be, too. Let your body rest, for goodness sakes!
My bowel function came back. I was very constipated at first – it was difficult expelling anything that had been sitting in my body since before the surgery. After my body had cleared that out, I had very loose bowel movements. I would get sharp pains in my lower abdomen right before I had to go and then once I went, I felt so much better. It will smell. It will be a funky, baby-poo color. Take the movements as a good sign! Your body is turning back on and begingin to function again! Also, get out of the house. My Mom would push me in my wheel chair (I had an amputation, remember?) around the block. The fresh air did WONDERS. Have somebody take you for a drive and just hang out in the sunlight for a bit. Do remember to take a Zip-lock with you. :] As per doctor’s orders, I was able to take part in GENTLE sexual activity, but the tube in my stomach did bother me a bit. I was not allowed to take showers, so I had my mother wash my hair in the sink and I used the detachable shower head in the bath tub to CAREFULLY clean my body, with the help of a wash cloth and plastic pitcher. I did tape around my tummy tube, sealing the area with plastic wrap and plastic medical tape. Don’t let the dirty water get into the incision or tube and don’t pick at the area! (I’ve heard horror stories about infections and Doctors having to re-open the wound to clean it out. YUCK.) This was the second week being home.
The third week, I moved out of my Mother’s house (she had to go back to work) and into my Mother in Law’s home. My husband had to work to keep our insurance, so I needed someone around during the day to take care of me. I was still sleeping a lot, like 10 hours a day, plus naps. My eating habits went back to modified regular. I enjoyed roasted chicken and steamed veggies, small amounts of pasta (do not eat meat loaf and pork ribs at the same… even if it looks good! I learned that the hard way.), toasted turkey sandwiches with veggies, steamed chicken pot stickers and veggies with soy sauce, plain, toasted Eggo waffles, small amounts of fruits and veggies (raw) as snacks, extra sharp cheddar cheese, pretzels and roasted potatoes. Pretty much anything that was low fat/grease and did not have too much sugar sat well with me. I found that I was able to drink water, lots and lots of water, as long as it had lemon juice squeezed in it. What a life saver – literally. My bowels became more “regular”, both in consistency and color. I still had the pain right before I expelled. Carry gallon sized Zip-locks in the car… it’s better to have something large and sealable with you, just in case you get sick while out and about. I also had my staples, all 50 of them, removed. (When the Doctors sewed me up after the surgery, they put staples all along the incision site. The stomach area gets pulled and twisted all day long with normal movement and they do this to protect your body and to keep the insides... inside!) They do not give you any pain medicine or anesthesia for the procedure… it actually takes place in your doctor’s office and he or she will use a sterile tool made especially for staple removal to pull the little buggers out. Honestly, it hurt, but not too badly. I think I worked myself up more than I needed to, but I was truthfully relieved to have them taken out. Once more step to being back to “normal”.
The fifth week post-surgery, I was scheduled to have the G- tube removed from my belly. Now, at least for me, the Doctor told me it wouldn’t hurt. It did hurt, but I kind of don’t tolerate pain very well. :] This procedure, just like the staple removal, takes place in the doctor’s office sans pain medicine. My Surgeon, deflated the little balloon that was keeping the tube inside my stomach and then snipped the stitches (that were holding the tube to my body) with out any pain. He told me to take a deep breath and on the count of three he was going to just pull the tube out. It did hurt and I screamed… after having something inside of your body for more than a month, you body becomes accustomed to it and starts to grow around it. The muscles between my actual stomach and skin did not like having the tube pulled out and I almost passed out, but I’m chalking this up to me making a “mountain out of a mole hill” again. :) I was able to eat within the hour and did not feel any pain, minus the few muscle twitches that lasted the rest of the day. My stomach was a bit sore for a few days… much like it would be if you were slugged very hard. Not too bad and very do-able.
This brings us to today, five and a half months later and I’m doing amazingly well. I eat pretty much what ever I want, with a few twists. I still can not do high fats and fried foods. Did I have gravy on my Thanksgiving meal? Yes and that ended poorly. Be smart in your decisions! I love, love, love soda water (Crystal Geyser) and the carbonation helps me burp which is a VERY good thing. I still get funky woozy feelings and have to remind my self that it’s just a burp working its way up. A few firm pats on the back and the pressure in my stomach goes away, along with the nausea. I pass gas all of the time, but Husband has become accustomed to it and calls me his “Little Gas Bag”. So endearing. Ha! I still can’t eat beef or anything with MSG. My energy levels have begun to improve, but they’re still not very high. I sleep about 8 hours and keep my activities in check. I don’t drink any alcohol, but I couldn’t tolerate it even before I had my Whipple. I have not had to go to the Hospital since being released -- with the exception being regular check-ups. I still vomit if I eat something to fatty. All bathroom type functions are well and working. I do pull my stomach muscles if I move too fast in an odd direction, but I’ve learned to manage. I eat five to six small meals a day and drink water and tea with ease. I can imagine that things will get even better with time and I can’t wait to find out how!
I hope this was able to help you get an idea of what to expect after this tough surgery and I wish you all many, many wonderful days. :D
by MarkB on Sun Jan 11, 2009 12:00 AM
I am amazed! I like to think that I can handle anything...but you have been through more crap than anyone that I have ever met or even heard of...and still you think of other people and how you can help. Absolutely incredible! You have motivated a motivator! I can't think of an appropriate word or phrase to sum up the positve energy that is you. All I can say is thank you. When ever I think things are rough I'll just read this post again!
by paulineqld on Sun Jan 11, 2009 12:00 AM
Wow! Thanks for that description it will be a great help to everyone either deciding whether to have the surgery or people like me who have had it, but wonder if what I am going through others do too.
You are a champion and certainly on this earth to inspire everyone, I wish you the very best for 2009.
by MissViolet on Wed Jan 14, 2009 12:00 AM
Oh! I'm so blushing right now. Thank you both for the kind words, but I'm just a girl who did what she had to keep on going. :]
I just wanted to put my experience out there so that maybe someone else could learn from it. It's no fun being all alone in this big, unfair (but beautiful) world and I just want to be able to let anyone going through the same thing know that they're not alone.
Please, if any of you have any questions or anything, I'd be more than happy to answer them. :]
by Steeler_Fan on Wed Jan 14, 2009 12:00 AM
Thank you, Miss Violet, for your detailed and candid account of your experience. I, too, had a Whipple done in March of 2007 for pancreatic cancer. My experience was similiar to yours, but not as extreme in that my hospital stay was shorter and I didn't have a GI tube when I left the hospital. My incision did get infected twice and had to be recut then packed 2 or 3 times a day. It took about nine months before the incision was fully closed and a few additional months before it was not tender qnd sore to the touch.
I had similiar eating and digestion challenges as well and still do to this day. I take pancreatic enzymes that definitely help, but I can't digest fats well either (due in part ot the removal of the gall bladder and duodeum I'm sure). Although I can eat almost everything I could before the surgery, there are some things, like pizza and tomato sauce, that are gone forever. I've tried to eat them a few times and paid for it for several days afterward. Definitely not worth it!
A word of encouragement to others who have this procedure or pancreatic cancer (especially if it is caught in stage 1) - you can recover and live a relatively normal life. I am in remission with clean tumor markers and CT scans, but I am realistic enough to know that it could come back at any time. A positive attitude is essential and it's important to reach out to others and not internalize the experience. Too often that will lead to self pity and depression and those are lethal to cancer survival.
Thank you again for your testimony, Miss Violet. I wish you all the good fortune for the coming year and beyond. You are an inspiration.
by MissViolet on Thu Jan 15, 2009 12:00 AM
Hey thanks, PB!
Yikes, just the thought of having my incision re-opened makes me cringe! It's been about six months since my surgery and my scar is starting to lighten up and is not very sensitive at all. I'm so glad yours has healed!
See, I don't have any problem with pizza or tomatos. Actaully, pizza sits very well with me.. the acidity in the tomato sauce cuts the fat in the cheese and the crust is a nice "bulker". I do have to watch the toppings though... I tried to have sausage once... that went terribly wrong. Way too greasy. :)
Oh! Speaking of things that help "cut", I find that if I eat something a little too greasy (somthing with a little more oil in it than I bargained for), acidic foods help to cut the grease and ease the digestion. My favorites include half a dill pickle or two to three green olives. I tired a glass of orange juice it didn;t turn out very well. I think I may have made my stomach TOO acidic, casuing my stomach to reject it. And, if you've REALLY gone overboard with something greasy, activated charcoal pills are AMAZING. I don't know how many times I've felt the "oh crap, I'm not going to be able to digest that," feeling and after taking two of the charcoal pills and ten minutes, I'm good to go. Do note, charcoal pills turn your number 2s black. It's quite shocking the first time you notice it! You can buy the pills at Walgreens or any vitamin store. I like to keep a few in my purse.. I can't tell you how many times I've been saved by these puppies. :)
by Steeler_Fan on Thu Jan 15, 2009 12:00 AM
On 1/15/2009 MissViolet wrote:Hey thanks, PB! Yikes, just the thought of having my incision re-opened makes me cringe! It's been about six months since my surgery and my scar is starting to lighten up and is not very sensitive at all. I'm so glad yours has healed! See, I don't have any problem with pizza or tomatos. Actaully, pizza sits very well with me.. the acidity in the tomato sauce cuts the fat in the cheese and the crust is a nice "bulker". I do have to watch the toppings though... I tried to have sausage once... that went terribly wrong. Way too greasy. :) Oh! Speaking of things that help "cut", I find that if I eat something a little too greasy (somthing with a little more oil in it than I bargained for), acidic foods help to cut the grease and ease the digestion. My favorites include half a dill pickle or two to three green olives. I tired a glass of orange juice it didn;t turn out very well. I think I may have made my stomach TOO acidic, casuing my stomach to reject it. And, if you've REALLY gone overboard with something greasy, activated charcoal pills are AMAZING. I don't know how many times I've felt the "oh crap, I'm not going to be able to digest that," feeling and after taking two of the charcoal pills and ten minutes, I'm good to go. Do note, charcoal pills turn your number 2s black. It's quite shocking the first time you notice it! You can buy the pills at Walgreens or any vitamin store. I like to keep a few in my purse.. I can't tell you how many times I've been saved by these puppies. :)
Thanks for getting back to me so quick. I' not sure why the tomato sauce (which is why I can't eat pizza) is so hard on me...maybe there's fat in it or maybe because it's so concentrated...but in any case, I appreciate your suggestions. I never knew about the acidity halping fat absorption or digestion, so I'll have to give that a try. I also didn't know about the charcoal pills, either. I'll try that, too. Thanks again. Talk again soon.
by revclg on Thu Feb 05, 2009 12:00 AM
Thank you, thank you, thank you and God Bless you as well! This was and is the most informative and encouraging message I've read up to date. I'm hoping and praying that I'll have the right perspective of the Whipple Procedure as you do, once my surgery occurs next week. In the meantime, this is a keeper, something to hang on to and share with my family and friends who don't know what to expect and/or how to best help.
I pray that this thing called cancer never ever infilitrate your life again. You my dear are an inspiration in every sense of the word.
Blessings and peace,
by alowe on Tue May 25, 2010 06:04 PM
Wow... I am so thankful that I found this post. I know it has been some time since you posted it, but nonetheless, it was very helpful to me. My mom just had a whipple surgery four days ago. She has never had anything major, so this was extremely scary for all of us. She is currently still in the SICU and they are having trouble getting her to wake up. They thought she may have had a stroke, but the CT this morning was normal. We are very thankful for that.
Your post certainly was an insight to what she will encounter in the days to come. I printed it out and hope it will help inspire her and offer some suggestions as well. I'm sure that as soon as she is well, she will use her experience to encourage others and to bring light to this subject. Thank you again for the time you took to post all that information in such detail. I just know how very helpful it will be to both her and my family as she heals.
I pray that you are doing well and that God will continue to allow you to share your experiences with others.
by sanvaco on Thu Jun 10, 2010 03:50 PM
I'm nearly six monthes post Whipple. Three monthes out from the surgery I was eating relatively normal food. One night I had sausage pizza and that was a bad choice.i recovered from that and went on my way. No fat!
About a month later I woke up on Saturday morning with servere abdominal pain. That night I went to the ER with pain and vomiting. I had some kind of infection in my gut. Not sure where exactly. I was in the hostpital for a week on antibiotics. Then another week at home on the same. In the last two monthes I have been nauseas and in pain. Have lost a lot of wieght. Have been taking a new med that has decreased the upset and increased my appitite, Marinol. I hope to go back to work in a couple weeks.
This has felt good to share this. I tend to internalize things and get depressed. Ive been hiding out for too many monthes.
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